arthritis foundation scientific strategy

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Science hasARTHRITISon the Run...

— Walter G. Barr, MD

2 “Science has Arthritis on the Run...” Arthritis Foundation Scientifi c Strategy 2015-2020 3

Science has ARTHRITISon the Run...

— Walter G. Barr, MD

www.arthritis.orgAmanda Niskar, DrPH, MPH, BSN, National Scientifi c Director1330 West Peachtree Street NW, Suite 100, Atlanta, GA 30309

4 “Science has Arthritis on the Run...”

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Goals and Targets

Appendix 1: Alignment with Arthritis and Related Disease Organizations

Scientifi cDiscovery

Arthritis and Related Diseasesin the U.S. Population

Pillar 3: Building Human Capital

References

Appendix 2: Learning from Complementary Approaches

Pillar 1: Delivering on Discovery

Appendix 3: ResearchAdvisory Committee

Pillar 2: Decision Making With Metrics

Appendix 4: Research and Strategic Planning Task Team

Appendix 5: AcknowledgmentsSc

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rheumatic conditions (23 percent, mostly vasculi-tis), and rheumatoid arthritis (22 percent).5 During the 20-year period, an additional 585,446 people had arthritis and other rheumatic conditions listed as an associated cause of death.5 These estimates may not capture mortality from treatment-related adverse effects, such as nonsteroidal anti-infl am-matory drug induced gastrointestinal bleeds.5

Forty-eight million U.S. adults (22 percent) report a disability.7 Arthritis or rheumatism is the most common cause of disability, while back or spine problems and heart trouble are among the top three causes.7 Among adults reporting a disabili-ty, the most commonly identifi ed limitations were diffi culty climbing a fl ight of stairs (22 million, 10 percent) and walking three city blocks (23 million, 10 percent).7 One in 10 adults has trouble walking a distance equal to walking from the parking lot to the back of a large store or through a mall.7 Functional limitations in common daily activities are common among adults with arthritis; 43 percent report it is “very diffi cult” or they “cannot do” at least one of nine important daily functional activities.8 Fourteen million adults reporting an activity limitation due to their arthritis report limitation in their ability to stoop, bend or kneel, and 11 million cannot walk one quarter of a mile.8 In every state at least two in fi ve adults with arthritis reports arthritis-attributable activity limita-tions.8 In some states, more than one in two adults report arthritis-attributable activity limitations.8 The prevalence of arthritis-attributable social partici-pation restriction ranges from at least one in 40 to about one in 11 adults across states, with a median of one in 20 (5 percent).8

The facts presented here are serious, and fi nding a cure for arthritis and related diseases is, and always will be, a priority for the Arthritis Founda-tion. We believe that science is advancing every day, and the optimism and energy we pour into scientifi c discovery are helping pave the way toward scientifi c progress. From pharmaceuticals to holistic practices, small steps to large break-throughs, we’re always fi nding ways to improve your quality of life.

Arthritis & Related Diseases in the U.S. Population

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More than one in fi ve U.S. adults report doctor-diagnosed arthritis.

Statistics show that arthritis and related diseases probably affect every family in the United States. Approximately 22 percent of U.S. adults (more than 50

million people) aged 18 years or older self-report doctor-diagnosed arthritis.1 In the United States, osteoarthritis affects 14 percent of adults aged 25 years and older and 34 percent (12.4 million) of those 65 years and older.2 It is estimated that 1.5 million U.S. adults have rheumatoid arthritis and 3.0 million U.S. adults are living with gout.3 Prevalence estimates for systemic lupus erythematosus range as high as 1.5 million.2

An estimated 294,000 U.S. children under age 18 (or one in 250 children) are diagnosed with arthritis or another rheumatologic condition.4

Arthritis kills people of all ages as the primary and associated cause of death. In addition, complica-tions from treatment of arthritis can result in death. During the 20-year period of 1979-1998, 146,377 deaths were recorded with an underlying cause of arthritis and other rheumatic conditions.5 Deaths occurred among all age groups, including children; 12 percent of deaths occurred among persons aged 15–44.5 Age-standardized death rates were higher for women and blacks.5 Among rheumatic conditions, systemic lupus erythematosus has a relatively high mortality (15 percent of all rheumat-ic disease mortality in 1997).6 Using 10 catego-ries of arthritis and other rheumatic conditions, three categories accounted for almost 80 percent of deaths: diffuse connective tissues diseases (34 percent; mostly systemic lupus erythema-tosus and systemic sclerosis), other specifi ed

An estimated

294,000 U.S. children

under age 18 (or one in

250 children) are diagnosed

with arthritis or another

rheumatologic condition.


Scientifi c Discovery

the MRI can help people with arthritis by revealing the health status of bones, cartilage, tendons and ligaments. Another instance of scientifi c discov-ery is the knowledge made available by genomics, proteomics, imaging and other technologies. The National Institutes of Health (NIH) is leading an effort called Big Data to Knowledge (BD2K) to transform mind-boggling quantities of data into knowledge to accelerate real-world applications of scientifi c fi ndings to improve human health.12 The results of these analytics are providing scientists with information to choose the correct biological targets so that a therapeutic product will work against the disease it is intended to treat.12

For our scientifi c strategic planning process, the Arthritis Foundation synthesized the results of interviews with a wide range of experts and constituents, including people with arthritis and related diseases, fi ndings documented in scientifi c

literature and lessons learned from relevant strate-gic plans and approaches. In addition, we issued a request for letters of interest open to every-one everywhere to submit their scientifi c ideas to inform the development of this strategy. We are collaborating with the efforts of other organi-zations and building upon the legacy of existing research for arthritis and related diseases. Please refer to the appendices for more information about the people and organizations who contributed to our scientifi c strategic planning process. This scientifi c strategy includes three interconnected scientifi c pillars: delivering on discovery, decision making with metrics and building human capital. For this strategy, arthritis refers to more than 100 types of arthritis and related diseases across the lifespan. Together, we can have “arthritis on the run” by accelerating the movement of scientifi c knowledge to a faster cure.13

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The wise words of Walter Barr,9 “science has arthritis on the run,” inspire research for arthritis and related diseases. Scientifi c research

and development holds the key to fi nding better diagnostics and treatments—and one day a cure—for more than 50 million Americans who face the daily challenges of arthritis and related diseases.10 For almost 70 years, the Arthritis Foundation has initiated and supported scientifi c discoveries that improve the lives of people with arthritis and related diseases. The Arthritis Foundation continues to lead the way in advancing scientifi c discoveries and seeking solutions that will positively impact the lives of those who suffer. Our commitment to fi nding a cure is unwavering.

For the purposes of this scientifi c strategy, scien-tifi c discovery includes a continuum of scientifi c research and development (Figure 1). Each stage of scientifi c research and development can infl u-ence the other stages. Each scientifi c discovery stage is informed by people with arthritis and related diseases. People with arthritis benefi t from each stage in the continuum.

To illustrate the continuum of scientifi c discovery, consider the following examples. The discoveries that made magnetic resonance imaging (MRI) possible were initiated in the basic laborato-ry. With the help of interdisciplinary experts, the MRI continued to move through the process of scientifi c discovery. The noninvasive MRI uses magnetic and radio frequency energy to reveal new information about the chemistry of the living body and the status of tissues and organs buried deep inside the human body.11 This information from

We are collaborating with other organizations and

building upon the

legacyof existing

researchfor arthritis and related diseases.

Scientifi c Strategy Goals

The scientifi c strategy is the direction the Arthritis Foundation Science Department is going over the next fi ve years. The scientifi c strategy has three pillars. The goal for each pillar is the impact of the inputs and outputs for each pillar (see Figures 2-4).

Pillar #1: Delivering on DiscoveryImproved decision making and better lives through improved prevention, earlier diagnosis and new treatments to prevent, control and cure arthritis and related diseases

Pillar #2: Decision Making With MetricsFact-based metrics for decision making and guiding actions to improve the health of people across the lifespan with arthritis and related diseases

Pillar #3: Building Human CapitalScientifi c research pipeline is strengthened and scientifi c discovery is catalyzed and accelerated for arthritis and related diseases


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Figure 1 | Scientifi c DiscoveryThe knowledge we learn at each stage in the continuum of scientifi c research and development can fuel

further efforts to meet the needs of people with arthritis and related diseases.

Scientifi c and technological advances are

progressing

at an increasingly rapid rate, making it possible to speed up the process for

fi nding a cure.

The mission of the Arthritis Foundation is to improve lives

through leadership in the prevention, control and

cure of arthritis and related diseases.

BasicScience

ClinicalStudies

Points of Care/DecisionMaking

SystematicReviews/Synthesis

PopulationHealth

Surveillance& Studies

ScientificDiscoveryContinuum


The Delivering on Discovery pillar (Figure 2) is the focus of the scientifi c strategy. In the past, it took an average of 17 years for only 14 percent of new

scientifi c discoveries to be available to the people in need.13 Scientifi c and technological advances are progressing at an increasingly rapid rate, making it possible to speed up the process for fi nding a cure.15 To accelerate our progress toward fi nding a cure, we are building and strengthening interdisciplinary teams to facilitate scientifi c research and development for every stage of scientifi c discovery.15 A key to delivering on discovery is that each team — no matter the stage of scientifi c discovery — has a plan for translation of scientifi c knowledge into the products people need to prevent, control and cure arthritis and related diseases. Each discovery team is taking a systematic approach to gather scientifi c information and produce one or more deliverables to fi nd a cure. The discovery teams are required to measure metrics that matter to be accountable and effective while strengthening our mission-driven culture and maximizing return on philanthropic investment.15,16 This approach to scientifi c discovery reinforces that scientifi c funding from the Arthritis Foundation is an investment, not a gift.15

The Arthritis Foundation is well positioned to understand and engage people with arthritis in the scientifi c discovery continuum. Whether we are facilitating better evidence-based decision making regarding complementary and alternative medicine use17 or providing leadership in the devel-opment of new diagnostics and western treatment approaches, collaboration and cooperation with other

organizations and experts are helping us navigate the realities of human biology and troubleshoot the complexities of clinical research and practice, as well as the many other challenges that occur on the scientifi c discovery continuum.15

An example of how the Arthritis Foundation is delivering on discovery includes our collaboration with the private and public sectors in the Biomark-ers Consortium.18 In this consortium, the Arthri-tis Foundation is a partner in accelerating the development of biomarker-based technologies, medicines and therapies for the prevention, early detection, diagnosis and treatment of disease.19

Biomarker-based technologies can defi ne disease remission and indicate timing for medication dosage to maintain disease remission. Specifi cally, with the scientifi c leadership of the Osteoarthri-tis Research Society International (OARSI) and management by the Foundation for the National Institutes of Health (FNIH), the Arthritis Founda-tion provides support for an ongoing large study to test and select biomarkers (tests of blood, urine, x-rays and MRI) to improve the ability to test drugs in clinical studies and, ultimately, improve life for people living with osteoarthritis of the knee or who are at risk of developing the disease.18 This project makes use of the National Institutes of Health Osteoarthritis Initiative (OAI), a public-do-main repository of medical images, patient data and bio-samples.20,21

Another exciting opportunity to delivery on discovery is the Accelerating Medicines Partnership (AMP). The Arthritis Foundation is a founding member of

Scientifi c Pillar | 1

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Delivery on Discovery: Objectives

Delivery on Discovery: How You Can Be Involved

AMP, which brings together the National Institutes of Health, 10 biopharmaceutical companies and several nonprofit organizations to accelerate the development of new diagnostics and pharmaceutical treatments.22 AMP partners are implementing a bold milestone-driven scientific plan that is identifying and validating the most promising biological targets for rheumatoid arthritis and systemic lupus erythe-matosus (lupus). These new targets will inform the development of new diagnostics and drugs to treat people with rheumatoid arthritis and lupus.22

In our collaborations with the Patient-Centered Outcomes Research Institute (PCORI), the Arthri-tis Foundation is providing leadership in compara-tive clinical effectiveness research (CER).23 CER determines which of the many health care options available to people with arthritis and those who care for them work best23. Disseminating the results and creating knowledge transfer instruments and shared decision-making tools are essential for allowing informed decision making for people with arthritis and related diseases.24,25 PCORI’s approach addresses the questions and concerns most relevant to people with arthritis.23 Throughout the scientific process, people with arthritis, caregiv-ers, clinicians and other health care stakeholders are involved along with researchers.23 PCORI encourages all investigators to be creative in how to include people with arthritis in CER every step of the process, from study design to study imple-mentation and interpretation of the findings. Every person, no matter how arthritis affects their life, is welcome to participate.

An example of a delivering on discovery project recently initiated by the Arthritis Foundation is a big data demonstration project. Data from the Million Veteran Program26 are being analyzed to create tools for predicting risk of arthritis development and progression, as well as tools for identifying and diagnosing arthritis earlier. When the algorithms are confirmed, clinicians can use the decision-making tools to diagnose people with arthritis and identi-fy those who need to be referred to rheumatol-ogists. Eventually the tools will be ready to use for telehealth and may even lead to pre-clinical diagno-sis. Telehealth is the process of applying telecom-munications and informatics technology to improve health care delivery and enhance service delivery models.27 Some of the federal departments that play primary roles in telehealth are the Department of Veterans Affairs, the Federal Communications Commission, the Department of Defense and the Department of Health and Human Services (HHS)27. Fully supported and integrated telehealth networks have the potential to bring significant health benefits to people with arthritis, including: providing health care in remote, underserved communities; facilitating electronic health record usage; increasing accessi-bility to expertise repositories available at academ-ic, public and private health care entities; connect-ing geographically-dispersed health care providers; and facilitating rapid, effective and coordinated responses during emergencies.27 The data and methods for this demonstration project are made possible by years of scientific discovery and technol-ogy research and development. The demonstration project is being implemented with a team of interdis-ciplinary experts who were introduced to each other by the Arthritis Foundation.

Figure 2 | Pillar #1 Logic Model: Delivering on Discovery

Scientific Pillar | 1

01 Develop a virtual rolodex of subject matter experts across the scientific discovery continuum who can be invited to provide expertise when needed to achieve a specific scientific task within a defined period of time

02 Issue requests for letters of interest and requests for proposals that require the candidates to:

a. Plan for translation of scientific knowledge into the products people need to prevent, control and cure arthritis and related diseases

b. Measure metrics that matter

03 Provide leadership and oversight in building collaborative, interdisciplinary teams who achieve meaningful results and accelerate scientific discovery to find a faster cure for people with arthritis and related diseases

04 Engage people with arthritis and related diseases in the scientific discovery process

01 Volunteer to be included in the virtual rolodex of subject matter experts

02 Respond to requests for letters of interest and proposals

03 Volunteer to be included in a scientific research project or other scientific activity

04 Donate and/or raise funds to support the mission of the Arthritis Foundation

Meaningful questions driven by people with arthritis and related diseases Subject matter experts to inform scientific discovery Understanding how to translate scientific discoveries for real-world use

Accelerated movement between each stage in scientific discovery Discovery and translation of scalable new products, tools and technologies

for diagnostics, interventions and a cure

Improved decision making and better lives through improved prevention, earlier diagnosis and new treatments to prevent, control and cure arthritis and related diseases

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Arthritis Foundation Scientifi c Strategy 2015-2020 1716 “Science has Arthritis on the Run...”

Scientifi c Pillar | 2

Decision Making With Metrics

Metrics are used to inform decisions and to prioritize our efforts to deliver on discoveries. Understanding baseline information, trends

over time and being able to measure change after an intervention is implemented are examples of information needed to identify needs and demonstrate impact. There is an ongoing need for updated and new data collection and analytics approaches to produce arthritis statistics and scientifi c facts for decision making (Figure 3).

Every day, the Arthritis Foundation receives internal and external requests for scientifi c arthritis facts that are used for decision making regarding prevention, treatment, advocacy and other actions. Many of our responses are based on public health surveillance data and other information that can be viewed at websites such as the Centers for Disease Control and Prevention.28 Inquiries we receive are answered with a combination of metrics, but not enough data are available to fully answer the questions. For example, when a concerned parent asks about the risk of their child developing osteoarthritis from a sports-related injury, metrics help us to respond. Although many physical and social benefi ts are enjoyed by people playing sports, more than 2.6 million individuals 19 years of age and younger are treated in the emergen-cy room each year for sports- and recreation-related injuries.29,30 While more data is critical, we do have an increasing body of evidence that links the develop-ment of osteoarthritis and injuries. We do know that an estimated 25 percent of Americans living with knee osteoarthritis experienced a previous anterior cruciate ligament (ACL) rupture, and the risk of knee

osteoarthritis from knee joint injury is approximately 50 percent.31-38 In the past 20 years, the number of ACL injuries reported in athletes younger than 18 years of age has increased because of a growing number of children and adolescents participating in organized sports, intensive sports training at an earli-er age, and a greater rate of diagnosis with increased awareness and use of advanced medical imaging.39

People with ACL injuries are up to 10 times more likely to develop arthritis of the knee.39 Learning to play sports safely can help prevent injuries.29,30

Military professionals are an example of another population at risk for traumatic joint injuries (29, 30). In particular, the incidence of traumatic ACL injuries is 10 times higher among U.S. service personnel than the reported rate for the U.S. general population.29,32

Another topic of questions received by the Arthri-tis Foundation is regarding the costs of arthritis to society. The Bone and Joint Initiative published a burden of disease report that included economic costs of musculoskeletal diseases.40 Taking into account all costs for people with a musculoskeletal disease, including other comorbid conditions, the cost of treating these individuals in addition to the cost to society in the form of decreased wages is estimated to be nearly $950 billion per year, 7.4 percent of the 2006 gross domestic product .40 The World Health Organization provides arthritis facts at the country level by reporting the disability-adjusted-life-year (DALY).41 The DALY allows the consistent assess-ment of arthritis burden across diseases, risk factors and geography by combining the years of life lost due to premature death and years of life lost due to time lived in less than full health.41 Additional metrics

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specific to arthritis regarding costs to society and returns on investment would be valuable to inform activities across the Arthritis Foundation.

The Arthritis Foundation is collaborating with the Centers for Disease Control and Prevention and other partners such as the National Institutes for Health to find ways to answer questions that have not yet been answered, as well as continuing to update existing facts as new information becomes available. The Arthritis Foundation is a Healthy People Consortium Partner to take actions to strengthen policies and improve practices that are driven by the best available scientific evidence and knowledge.42 Healthy People works across Health and Human Services (HHS) to attain high-quality, longer lives free of preventable disease, disability, injury and premature death.43 The Healthy People 2020 objectives track a variety of pain, function and intervention measures that are important for monitoring progress in addressing arthritis as a public health problem.44 Mortality and comorbidity – arthritis-attributable activity limitations – can affect prevention and treatment of comorbidities, such as diabetes and heart disease.45 The Arthritis Founda-tion is working with other Healthy People Partners to consider the development of Healthy People 2030 objectives such as:

Fatigue: a clinically important symptom of many types of arthritis and other rheumatic conditions

Early diagnosis of inflammatory types of arthritis: there is a continuing effort to develop early biomarkers (both biochemical and imaging markers) of arthritis, osteoporosis and chronic back conditions to allow adequate and early assessment and treatment of these conditions

Social participation: an important part of the WHO International Classification of Function-ing, Disability and Health, should be measured for people with arthritis and other chronic conditions

Anxiety and depression: frequently observed outcomes associated with chronic conditions such as arthritis and related conditions

A specific source of data to produce metrics for public health surveillance and health research is registries. A registry is a collection of information about individ-ual people, usually focused around a specific diagno-sis or condition. Participation in a registry is likely to increase what we know about a specific condition, help health care professionals improve treatment and allow researchers to design better studies on a particular condition, including development and testing of new treatments.46 Arthritis registries can help discover how arthritis affects daily activities, understand the impact of various treatments, find out which treatments are most beneficial, and uncover identifiable risks for arthritis that can be limited – so arthritis can be prevented. Each registry has a focus on a particular type of data or a specific population of interest. There are many arthritis registries. A few examples of arthritis registries include an EHR-en-abled registry (RISE),47 the Arthritis Internet Registry (AIR)48 and the Childhood Arthritis and Rheuma-tology Research Alliance (CARRA) network.49 The CARRA network enables data collection about the major pediatric rheumatic diseases (juvenile arthritis, systemic lupus, dermatomyositis, scleroderma, vascu-litis and pain syndromes). The unique and variable features of populations and registry designs provide valuable and complementary data on comparative


effectiveness and safety of treatments such as biologic agents.50 The Arthritis Foundation can provide leadership by working across organizations to standardize data collection in the creation of arthri-tis registry capabilities for capture, storage, visualiza-tion and secure sharing of standardized, validated core metrics that are patient-driven. If the arthritis registries in the United States agree to collecting standardized core metrics, then the data can be pooled together to have statistical power to answer questions of interest to everyone. Registries provide overall acceleration of the research process and also provide data to design more effective clinical trials.15

In addition to supporting the collection of meaning-ful data for metrics, the Arthritis Foundation can also lead the development of new metrics. For example, development of a pain index relevant to all people with arthritis could document the therapeu-tic value of a prescribed medication or non-pharma-cologic treatment to provide clinicians and people with arthritis the objective information needed to maintain health insurance coverage. One option for developing such a pain index is by combining

expertise from existing efforts such as Outcome Measures in Rheumatology (OMERACT) and Patient Reported Outcomes Measurement Infor-mation System (PROMIS). PROMIS is a system of highly reliable, precise measures of patient-reported health status for physical, mental and social well-be-ing.51 PROMIS tools measure what people are able to do and how they feel by asking questions about factors such as anxiety, anger, depression, fatigue, pain behavior, pain interference, satisfaction with discretionary social activities and satisfaction with social roles.51

Arthritis registries can help discover how arthritis affects daily activities, understand the impact of various treatments, and uncover identifiable risks for arthritis that can be limited — so arthritis can be prevented.



01 Facilitate the updating of priority arthritis statistics

02 Prioritize questions yet to be answered and determine options to answer these questions

03 Collaborate with Healthy People to achieve and measure progress on 2020 objectives

04 Collaborate with Healthy People to develop new 2030 objectives

05 Collaborate with international efforts to measure and compare arthritis statistics across geographies

06 Convene interdisciplinary subject matter experts across organizations to standardize and validate core metrics for registries that are patient-driven

07 Convene interdisciplinary subject matter experts to develop a pain index for people with arthritis

01 Identify questions that are relevant to outcomes of persons with arthritis

02 Identify existing data that could be used to answer priority questions

03 Identify improved measurement and analytic approaches to answering questions

04 Contribute to the achievement of the Healthy People 2020 objectives

05 Identify and provide lessons learned from relevant international efforts

06 Volunteer to join a registry

07 Identify registry experts and relevant registries and provide lessons learned

08 Identify and provide lessons learned from relevant pain index activities


Decision Making With Metrics: Objectives

Decision Making With Metrics: How You Can Be Involved


Figure 3 | Pillar #2 Logic Model: Decision Making With Metrics

Registry data, biomarker data, health survey data and other types of data Analytics to translate accurate, relevant and timely data into results

Quantification of the consequences of arthritis and related diseases Measures to document impact and monitor progress for specified goals

Fact-based metrics for decision making and guiding actions to improve the health of people across the lifespan with arthritis and related diseases

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Building Human Capital

To assure that the fi eld of scientifi c research for arthritis and related diseases has a strong interdisciplinary pipeline of scientists to implement our fi rst two

pillars, the third pillar is focused on building human capital for today and for the future. Scientifi c research for arthritis and related diseases lacks a critical mass of investigators to sustain the scientifi c pipeline.52,53 Finding time to participate in appropriate training opportunities is a challenge for many investigators.54 As a nonprofi t, the Arthritis Foundation can design investigator-friendly training opportunities to build human capital for the scientifi c pipeline. Scientists can network and learn from each other while staying up to date on interdisciplinary skills that will position them to turn scientifi c discoveries into real-world uses.55 Successful health science training programs create diversity, energize the trainers, inspire the trainees and recruit and retain talent.56

The Arthritis Foundation seeks to strengthen the pipeline of talent conducting scientifi c research and development for arthritis and related diseases by recruiting 1) trainees who are experts in arthritis research but would benefi t from training in interdis-ciplinary scientifi c research and development skills, and 2) trainees who have never worked in the fi eld of arthritis research but are experienced investiga-tors interested in applying their talents to arthritis research, and would benefi t from understanding the history and current needs in the fi eld of arthri-tis research (Figure 4). The Arthritis Foundation will provide curriculum for the interdisciplinary trainings and identify experts who will be paid for their time to provide real-life examples of topics covered in

the curriculum. Travel to in-person trainings will be covered for both trainees and experts. This training program would be symbiotic with existing training and mentoring programs.

This training approach is unique and fi lling a much needed scientifi c research and development gap. There are many training and mentoring programs that we can learn from as we develop our imple-mentation plan. For example, this new program can complement and learn from the American College of Rheumatology/CARRA Mentoring Interest Group, which encompasses the majority of fellows and junior faculty in pediatric rheumatology.57

Another source of lessons learned that can be built upon for the Arthritis Foundation training program is the Arthritis Foundation’s experience of being one of the sponsors for the 2014 Sage Bionet-works’ (a nonprofi t research organization working to redefi ne how complex biological data are gathered, shared and used) Rheumatoid Arthritis Responder Challenge. This challenge was intended to crowd-source human genetics with the ultimate objective of identifying genetic predictors that could improve treatment for those suffering from rheumatoid arthritis.58 This project inspired the imaginations of scientists around the world — many of whom had never thought about or studied arthritis. To steer the investigators into the validation phase, Sage Bionet-works quickly realized the need to provide training about the history and needs of rheumatoid arthritis research so that investigators new to arthritis could build upon existing knowledge and improve the deliverables being produced.



01 Develop an implementation plan for the training program

02 Identify existing curriculum and/or develop new curriculum for the training programa. Arthritis research history and current needsb. Interdisciplinary skills to turn scientific discoveries into real-world uses

03 Pilot test the training program

04 Evaluate the pilot training program

05 Revise the training program based on evaluations

06 Implement the training program including ongoing evaluation

07 Track the impact of the training program

01 Spread the word about the interdisciplinary training program

02 Be a trainee

03 Identify and provide lessons learned from other mentoring and training programs

04 Volunteer to be an expert who develops or teaches the curriculum

05 Volunteer to assist with planning, implementation and/or evaluation of the program


Building Human Capital: Objectives

Building Human Capital: How You Can Be Involved

Building Human Capital

FIGURE 4 | Pillar #3 Logic Model: Building Human Capital

Understanding of training and mentoring program approaches Understanding of how to turn scientific discoveries into real-world uses Trainees and experts Curriculum

Local connections are strengthened Quality proposals Successful scientific research and development that accomplishes a

specific scientific goal

Scientific research pipeline is strengthened and scientific discovery is catalyzed and accelerated for arthritis and related diseases

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GO

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TS The Arthritis Foundation’s mission is to improve lives through leadership in the prevention, control and

cure of arthritis and related diseases. The scientifi c strategy is the direction the Arthritis Foundation Science Department is going during 2015-2020 to bring everyday wins now and in the future for a lifetime of better. The scientifi c strategy has three pillars. Each pillar is designed to champion and

accelerate progress for achieving our mission. The goal for each pillar is the impact of the inputs and outputs for each pillar (see Figures 2-4). The three pillars and their goals are as follows:

Pillar #1: Delivering on Discovery Improved decision making and better lives through improved prevention, earlier diagnosis

and new treatments to prevent, control and cure arthritis and related diseases

Pillar #2: Decision Making With Metrics Fact-based metrics for decision making and guiding actions to improve the health of

people across the lifespan with arthritis and related diseases

Pillar #3: Building Human Capital Scientifi c research pipeline is strengthened and scientifi c discovery is catalyzed and

accelerated for arthritis and related diseases

In collaboration with other organizations, the Arthritis Foundation Scientifi c Strategy 2015-2020 is contribut-ing to the achievement of the following Healthy People 2020 targets. One of the criteria for selecting these targets is that existing data sources are available to measure progress on meeting the targets.

Goals and Targets


Goals and Targets

OBJECTIVE BASELINE† TARGETTARGET-SETTING

METHODDATA

SOURCES

Reduce the mean level of joint pain among adults with doctor-diagnosed arthritis

5.6 on a VAS of 0-10

5 mean pain level

10% improvement

NHIS, CDC/NCHS

Reduce the proportion of adults with doctor-di-agnosed arthritis who experience a limitation in activity due to arthritis or joint symptoms

39.4% 35.5%10%

improvementNHIS, CDC/NCHS

Reduce the proportion of adults with doctor-diagnosed arthritis who find it “very difficult” to walk a quarter of a mile — about three city blocks

15.2% 13.7%10%


Reduce the proportion of adults with doctor-diagnosed arthritis who find it “very difficult” to walk up10 steps without resting

10.8% 9.7%10%


Reduce the proportion of adults with doctor-diagnosed arthritis who find it “very difficult” to stoop, bend or kneel

21.7% 19.5%10%


Reduce the proportion of adults with doctor-diagnosed arthritis who find it “very difficult” to use fingers to grasp or handle small objects

4.4% 4.0%10%


Reduce the proportion of adults with doctor-diagnosed arthritis who have difficulty in performing two or more personal care activities, thereby preserving independence

2.7% 2.4%10%


Reduce the proportion of adults with doctor-diagnosed arthritis who report serious psychological distress

7.3% 6.6%10%


Reduce the unemployment rate among adults with doctor-diagnosed arthritis

35.0% 31.5%10%


Reduce the proportion of adults with doctor-diagnosed arthritis who are limited in their ability to work for pay due to arthritis

33.1% 29.8% 10%


Increase the proportion of overweight and obese adults with doctor-diagnosed arthritis who receive health care provider counseling for weight reduction

41.2% 45.3%10%


Healthy People 2020 Objectives and Targets Relevant to Arthritis Foundation Scientific Strategy (59)*

Goals and Targets

OBJECTIVE BASELINE† TARGETTARGET-SETTING

METHODDATA

SOURCES

Increase the proportion of adults with doctor-diagnosed arthritis who receive health care provider counseling for physical activity or exercise

52.2% 57.4%10%


Increase the proportion of adults with doctor-diagnosed arthritis who have had effective, evidence-based arthritis education as an integral part of the management of their condition

10.6% 11.7%10%


Increase the proportion of adults with chronic joint symptoms who have seen a health care provider for their symptoms

72.0% 79.2%10%


Reduce activity limitation due to chronic back conditions

30.7 adults per 1,000

27.6 adults per 1,000

10% improvement

NHIS, CDC/NCHS

Increase the proportion of adults who self-report good or better physical health

78.8 79.8Minimal

statistical significance

NHIS, CDC/NCHS

Increase the proportion of adults who self-report good or better mental health

79.1 80.1Minimal

statistical significance

NHIS, CDC/NCHS

Increase the proportion of older adults with one or more chronic health conditions who report confidence in managing their conditions

TBD TBD TBDBRFSS, CDC/PHSIPO

Reduce the proportion of older adults who have moderate to severe functional limitations

29.3% 26.4%10%

improvementMCBS, CMS

Increase the proportion of older adults with reduced physical or cognitive function who engage in light, moderate or vigorous leisure-time physical activities

32.6% 35.9%10%


*VAS = visual analog scale; NHIS = National Health Interview Survey; CDC = Centers for Disease Control and Prevention; NCHS = National Center for Health Statistics; NHANES = National Health and Nutrition Examination Survey; NHDS = National Hospital Discharge Survey; TBD = to be determined; BRFSS = Behavioral Risk Factor Surveillance System; PHSIPO = Public Health Surveillance and Informatics Program Office; MCBS = Medicare Current Beneficiary Survey; CMS = Centers for Medicare & Medicaid Services

†Baseline data was age adjusted to the year 2000 standard population.


Goals and Targets

In collaboration with other organizations, the Arthritis Foundation Scientifi c Strategy 2015-2020 is contrib-uting to the achievement of the following Accelerating Medicines Partnership (AMP) goals.

Accelerating Medicines Partnership (AMP) Goals60

The Accelerating Medicines Partnership (AMP) has the ultimate goal of increasing the number of new diagnostics and therapies for patients, and reducing the time and cost of developing them.52 By optimizing the process for identifying and validating clinically-relevant disease targets for drug design, AMP aims to increase effi ciency through:

Reducing development time: accelerating the hard work of sorting through a large number of candidates to identify the best biological targets for drug development could save months or even years of early stages of discovery.

Improving prospects for success: with disease targets and biomarkers that have been validated rigorously with human data, higher confi dence about effi cacy should be achieved, allowing researchers to move the most promising compounds quickly into the pipeline with the expectation of fewer failures in late-stage clinical trials.

Lowering costs: shorter development timeframes and fewer late-stage drug failures should reduce the cost of delivering new and effective medicines to patients.

AMP will improve the process for identifying and validating clinically-relevant disease targets for drug design by:

Providing better understanding of biological targets and identifi cation of valid biomarkers to enable more robust clinical trials — in part by testing therapies on patients most likely to respond to them based on the molecular profi les of their disease.

AMP will increase the number and effectiveness of new targeted therapies via:

Understanding the biological pathways underlying disease and the specifi c biological targets that can alter disease to lead to more rational drug design and better tailored therapies.

Reducing the number of failures in Phase II and Phase III clinical trials to increase the number of new drugs developed per $1 billion of research and development investment.

Increasing expected returns to enhance the attractiveness of investing in drug development.

Goals and Targets

In collaboration with other organizations, the Arthritis Foundation Scientifi c Strategy 2015-2020 is contrib-uting to the achievement of the following Biomarkers Consortium goals.

Biomarkers Consortium Goals61

The Biomarkers Consortium’s goal is to combine the forces of the public and private sectors to accelerate the development of biomarker-based technologies, medicines and therapies for the prevention, early detection, diagnosis and treatment of disease.53

Strategies to attain that overall goal include the following:

Facilitate the development and qualifi cation of biomarkers using new and existing technologies;

Help qualify biomarkers for specifi c applications in diagnosing disease, predicting therapeutic response or improving clinical practice;

Generate information useful to inform regulatory decision making;

Make consortium project results broadly available to the entire scientifi c community.

Arthritis Foundation Scientifi c Strategy 2015-2020 33

ON

TH

E

RU

NR

UN

Together, we can have “arthritis on the run” by

accelerating the movement

of scientifi c knowledge to a faster cure.

References

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2 Lawrence RC, Felson DT, Helmick CG, et al, for the National Arthritis Data Workgroup. Estimates of the prevalence of arthritis and other rheumatic conditions in the United States: Part II. Arthritis Rheum 2008;58(1):26–35

3 Sacks JJ, Luo Y-H, Helmick CG. Prevalence of specifi c types of arthritis and other rheumatic conditions in the ambulatory health care system in the United States, 2001-2005. Arthritis Care & Research 2010;62(4):460-464.

4 Sacks JJ, Helmick CG, Luo YH, et al. Prevalence of and annual ambulatory health care visits for pediatric arthritis and other rheumato-logic conditions in the United States in 2001-2004. Arthritis Care Res 2007;57(8):1439–1445.

5 Sacks JJ, Helmick CG, Langmaid G. Deaths from arthritis and other rheumatic conditions, United States, 1979–1998. J Rheumatol 2004;31:1823–1828.

6 Sacks JJ, Helmick CG, Langmaid G, et al. Trends in deaths from systemic lupus erythematosus- United States, 1979-1998. MMWR 2002;51(17):371–374.

7 Brault MW, Hootman JM, Helmick CG, et al. Prevalence and Most Common Causes of Disability Among Adults - United States, 2005. MMWR 2009;58(16):421-426.

8 Centers for Disease Control and Prevention. About Arthritis Disabilities and Limitations. Accessed October 13, 2014.

9 Alliance for Academic Internal Medicine. 2010. ASP Honors Walter G. Barr, MD, with Eric G. Neilson, MD, Distinguished Professor.

10 Arthritis Foundation.

11 National Institutes of Health: National Institute of General Medical Sciences. Why Do Basic Research. Accessed September 29, 2014.

12 National Institutes of Health Big Data to Knowledge: About BD2K. Accessed September 29, 2014.

13 National Institutes of Health: National Heart, Lung, and Blood Institute. New NHLBI Center Focuses on Translation Research and Implementa-tion Science. Accessed September 29, 2014.

14 Balas EA, Boren SA. Yearbook of Medical Informatics: Managing Clinical Knowledge for Health Care Improvement. Stuttgart, Germany: Schattauer Verlagsgesellschaft mbH; 2000.

15 FasterCures. 2013. Honest Brokers for Cures: How Venture Philanthropy Groups are Changing Biomedical Research. Accessed October 1, 2014.

16 FasterCures. 2013. Measuring and Improving Impact: A Toolkit for Nonprofi t Funders of Medical Research. Accessed October 1, 2014.

17 National Center for Complementary and Alternative Medicine. Complementary, Alternative, or Integrative Health: What’s In a Name? Accessed October 10, 2014.

18 Hunter DJ, Losina E, Guermazi A, et al. A pathway and approach to biomarker validation and qualifi cation for osteoarthritis clinical trials. Curr Drug Targets 2010;11(5):536-45.

19 Foundation for the National Institutes of Health. The Biomarkers Consortium. Accessed October 1, 2014.

20 Osteoarthritis Initiative. The Osteoarthritis Initiative: A Multi-center Observational Study of Men and Women. Accessed October 1, 2014.

21 Foundation for the National Institutes of Health. 2012. Osteoarthritis Biomarkers Project May Lead to Better Quality of Life for Those with Osteoarthritis. Accessed October 1, 2014.

22 National Institutes of Health. Accelerating Medicines Project: Autoimmune Diseases of Rheumatoid Arthritis and Lupus. Accessed October 1, 2014.

23 Patient-Centered Outcomes Research Institute. About Us. Accessed October 1, 2014.

24 Offi ce of Communications and Knowledge Transfer (OCKT). February 2014. Agency for Healthcare Research and Quality, Rockville, MD. Accessed October 10, 2014

25 Rader T, Pardo JP, Stacey D, et al. Update of strategies to translate evidence from Cochrane Musculoskeletal Group systematic reviews for use by various audiences. J Rheumatol 2014; 41(2):194-205.

26 Department of Veterans Affairs Offi ce of Research & Development. Million Veteran Program (MVP). Accessed October 12, 2014

27 Department of Health and Human Services. 2009. Telehealth Report to Congress. Accessed October 1, 2014.

28 Centers for Disease Control and Prevention. Arthritis-Related Statis-tics. Accessed October 1, 2014.

29 National Institutes of Health. Preventing Musculoskeletal Sports Injuries in Youth: A Guide for Parents. Accessed October 1, 2014

30 Centers for Disease Control and Prevention. Sports Injuries: The Reality. Accessed October 1, 2014

31 Hill CL, Seo GS, Gale D, et al. Cruciate ligament integrity in osteoarthritis of the knee. Arthritis Rheum 2005;52:794-799.

32 Amin S, Guermazi A, Lavalley MP, et al. Complete anterior cruciate ligament tear and the risk for cartilage loss and progression of symptoms in men and women with knee osteoarthritis. Osteoarthritis Cartilage 2008;16:897-902.

33 Lohmander LS, Ostenberg A, Englund M, et al. High prevalence of knee osteoarthritis, pain, and functional limitations in female soccer players twelve years after anterior cruciate ligament injury. Arthritis Rheum 2004;50:3145-3152.

34 Englund M, Lohmander LS. Risk factors for symptomatic knee osteoarthritis fi fteen to twenty-two years after meniscectomy. Arthritis Rheum 2004;50:2811-2819.

35 von Porat A, Roos EM, Roos H: High prevalence of osteoarthritis 14 years after an anterior cruciate ligament tear in male soccer players: a study of radiographic and patient relevant outcomes. Ann Rheum Dis 2004;63:269-273.

36 Gelber AC, Hochberg MC, Mead LA, et al. Joint injury in young adults and risk for subsequent knee and hip osteoarthritis. Ann Intern Med 2000;133:321-328.


References

37 Kessler MA, Behrend H, Henz S, et al. Function, osteoarthritis and activity after ACL-rupture: 11 years follow-up results of conservative versus reconstructive treatment. Knee Surg Sports Traumatol Arthrosc 2008;16:442-448.

38 Cooper C, Snow S, McAlindon TE, et al. Risk factors for the incidence and progression of radiographic knee osteoarthritis. Arthritis Rheum 2000;43:995-1000.

39 LaBella CR, Hennrikus W, Hewett TE, et al. Anterior cruciate ligament injuries: diagnosis, treatment, and prevention. Pediatrics 2014;133;e1437.

.40 The Bone and Joint Initiative USA. 2011. The Burden of Musculoskeletal Diseases in the United States, Second Edition. Accessed October 1, 2014.

41 World Health Organization. Global Burden of Disease. Accessed October 1, 2014.

42 Healthy People 2020. Consortium Members. Accessed October 1, 2014.

43 Healthy People 2020. Home. Accessed October 1, 2014.

44 Healthy People 2020. Objectives: Arthritis, Osteoporosis, and Chronic Back Conditions. Accessed October 1, 2014.

45 Bolen J, Murphy L, Greenlund K, et al. Arthritis as a potential barrier to physical activity among adults with heart disease –United States, 2005 and 2007. Morbid Mortal Wkly Rept. 2009;58(7):165-169.

46 National Institutes of Health. List of Registries. Accessed October 1, 2014.

47 American College of Rheumatology. Rheumatology Clinical Registry. Accessed October 1, 2014.

48 Arthritis Foundation. Arthritis Internet Registry. Accessed October 1, 2014.

49 The CARRA Registry. Specifi c Aims. Accessed October 1, 2014.

50 Curtis JR, Jain A, Askling J, et al. A Comparison of Patient Characteris-tics and Outcomes in Selected European and U.S. Rheumatoid Arthritis Registries. Semin Arthritis Rheum 2010;40(1):2–14.e1.

51 Patient Reported Outcomes Measurement Information System. About PROMIS. Accessed October 1, 2014.

52 American College of Rheumatology. Introduction to the Survey. Accessed September 29, 2014.

53 American College of Rheumatology. 2012. Final report: Blue Ribbon Panel on Academic Rheumatology. Accessed October 1, 2014. .

54 Deal CL, Hooker R, Harrington T, et al. The United States Rheuma-tology Workforce: Supply and Demand, 2005-2025. Arthritis Rheum 2007;56:722-9. Accessed September 29, 2014

55 FasterCures. 2010. Getting Started: A Medical Research and Devel-opment Primer. Accessed October 1, 2014.

56 Robert Wood Johnson Foundation. September 10, 2008. RWJF Awards 15 Nurse Faculty Scholars Research and Mentoring Support. Accessed September 29, 2014.

57 Nigrovic PA, Muscal E, Riebschleger M, et al. AMIGO: a novel approach to the mentorship gap in pediatric rheumatology. J Pediatr 2014;164:226-7.

58 Sage Bionetworks. Rheumatoid Arthritis Responder Challenge. Accessed October 1, 2014.

59 Healthy People 2020. 2020 Topics & Objectives – Objectives A-Z. Accessed October 9, 2014.

60 Foundation for the NIH. Accelerating Medicines Partnership: Key Initiatives. Accessed October 9, 2014.

61 The Biomarkers Consortium What We Do. Accessed October 9, 2014.

Appendix | 1

Arthritis Organizations

As part of the strategic planning process, the Arthritis Foundation identifi ed organizations conducting scientifi c activities in the fi eld of research for arthritis and related diseases. A summary of selected organizations are listed in this appendix.

ORGANIZATION DESCRIPTION REFERENCE

Advocates for Fibromyalgia Funding, Treatment Education and Research (AFFTER)

Surveys to members with abstracts of results published; has awarded two small research grants

AFFTER research

Agency for Healthcare Research and Quality (AHRQ)

Career development; pre-doc and post-doc fellowships; training programs; program projects; research projects; cooperative agreements

AHRQ Funding and Grants

Agency for Healthcare Research and Quality (AHRQ)

Registry of Patient Registries AHRQ Registries

American Academy of Orthopedic Surgeons (AAOS)

Collects, analyzes and disseminates scientifi c data and information; clinical practice guidelines; appropriate use criteria

AAOS research

American Academy of Orthopedic Surgeons (AAOS)

American Joint Replacement Registry AJRR

American College of Rheumatology (ACR)

Mentorship program and AMIGO (ACR/CARRA Mentoring Interest Group for Pediatric Rheumatologists)

ACR Mentor


Epidemiologic studies as a future direction ACR Research


ACR Registry and Rheumatology Informatics System for Effectiveness (RISE) Registry

Rheumatology Clinical Registry


Promotes research in both adult and pediatric rheumatology

Research Agenda

American Orthopaedic Society for Sports Medicine (AOSSM)

Advances clinical research in orthopaedic sports medicine and supports career stages for AOSSM members

Research

Arthritis Australia Young and emerging musculoskeletal researchers Arthritis Australia


APPENDIX 1

Arthritis Internet Registry (AIR) Internet-based, patient-reported outcomes registry – a partnership with the Arthritis Foundation, National Databank for Rheumatic Diseases, Quest Diagnostics and North Shore LIJ

AIR

Arthritis National Research Foundation (ANRF)

Awards to young MD and PhD investigators to develop careers; grants to cure arthritis and related autoimmune diseases

ANRF Grants

Arthritis Research UK Funds grants for all types of arthritis and related musculoskeletal conditions from laboratory-based science through to multi-center clinical trials

Research Strategy

Arthritis Society Canada Overall goal to search for the causes and cures of arthritis and to promote the best possible treatments and care for those living with arthritis

Strategic Research Plan

Association Francaise De Lutte Antirhumatismale (AFLAR)

Research in France; has a National Alliance Against Osteoarthritis

AFLAR

Brigham and Womens Hospital Brigham Rheumatoid Arthritis Sequential Study (BRASS)

BRASS

Centers for Disease Control and Prevention

National Center for Health Statistics collects data to monitor the health of the United States population

Surveys


Public health agenda addressing the assessment function for psoriasis and psoriatic arthritis

Agenda

Centers for Disease Control and Prevention/Arthritis Foundation

Blueprint for action to reduce osteoarthritis symptoms such as pain, disability and loss of function

National Agenda

Childhood Arthritis and Rheumatology Research Alliance (CARRA)

Strategy for each disease category is based on existing knowledge about that condition, as well as outstanding needs for children affected by these diseases

Scientific Agenda

Childhood Arthritis and Rheumatology Research Alliance (CARRA)

Patient and pharmacosurveillance registry; >9000 patients enrolled

CARRAnet

Cincinnati Children’s Research registry for juvenile rheumatoid arthritis; completed project

JRA Research Registry


Cincinnati Children’s Center for Autoimmune Genomics and Etiology (CAGE); registry and biorepository

CAGE

Congressionally Directed Medical Research Programs (CDMRP), Department of Defense, Peer Reviewed Orthopedic Research Program

Supports military-relevant, peer-reviewed orthopaedic research; provides all warriors affected by orthopaedic injuries sustained in the defense of our Constitution the opportunity for optimal recovery and restoration of function

Orthopaedic

Consortium of Rheumatology Researchers of North America (CORRONA)

Rheumatoid arthritis, gout and spondyloarthritis registries (psoriasis in development)

CORRONA

Cure JM Foundation Primary goal of finding a cure for Juvenile Myositis (JM); clinical and translational research projects; pilot studies

Research

Danish Rheumatism Association Funds a substantial part of the non-commercial rheumatology research in Denmark; conducts outreach campaigns

Research

Department of Defense Congressionally Mandated Topic Areas

The vision is to improve the health and well-being of all military service members, veterans and beneficiaries; this program includes three research topic areas for people with arthritis

Research

Duke University Duke Clinical Registries, including autoimmunity, lupus and vasculitis

Duke Clinical Registries

European League Against Rheumatism (EULAR)

EULAR Standing Committee on Epidemiology

EULAR Epidemiology

Fondation Arthritis Recherche & Rhumatismes

Benchmarking of labs working on rheumatic diseases in France; Launched Network Program

Fondation Arthritis

Foundation for Physical Therapy Scholarships; fellowships; grants to emerging investigators

Foundation for PT Funding

Foundation for the National Institutes of Health

Public-private partnership developed to transform the current model for identifying and validating the most promising biological targets for the development of new drugs and diagnostics

AMP

Global Healthy Living Foundation Arthritis Patient Partnership with Comparative Effectiveness Researchers (AR-PoWER)

AR-POWER


APPENDIX 1

Hospital for Special Surgery (HSS)

Several arthritis-related and condition- specific registries

HSS Registries

Institute for Health Metrics and Evaluation (IHME)

Global burden of disease estimates measuring the impact of hundreds of diseases, injuries and risk factors in 21 regions around the world over two decades

Metrics

Kaiser Permanente KP National Implant Registries Kaiser Implant Registries

Kaiser Permanente KP Total Joint Replacement Registry Kaiser TJR Registry

Kaiser Permanente Autoimmune Disease Registry Kaiser Autoimmune

Lupus Foundation of America Grants and fellowships for young investigators

Lupus research

Lupus Foundation of America Program directed to break down barriers in drug development

Lupus barriers

National Center for Advancing Translational Sciences

Catalyzes the generation of innovative methods and technologies to enhance the development, testing and implementation of diagnostics and therapeutics

NCATS

National Data Bank for Rheumatic Diseases

Patient-reported arthritis registries NDB

National Institute for Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

Long-range plans for health disparities and information dissemination

NIAMS Long-Range Plan

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

Fellowship programs and training grants NIAMS Programs

National Psoriasis Foundation National Psoriasis Foundation funds the start-up of promising new and innovative studies through Discovery and Translational grant programs.

Psoriasis Mission

National Psoriasis Foundation National Psoriasis Victor Henschel BioBank Psoriasis biobank

New York University Langone Medical Center

Arthritis Translational Registry Biorepository NYU Arthritis Registry


New York University Medical Center

NIH Research Registry for Neonatal Lupus is the largest database of families in which one child has had neonatal lupus

National Research Registry for Neonatal Lupus

North American Rheumatoid Arthritis Consortium (NARAC)

Genetics of Rheumatoid Arthritis Registry NARAC Registry

Oklahoma Medical Research Foundation

Lupus Family Registry and Repository (LFRR) is a long-term research project operating in conjunction with the Lupus Genetics Studies

Lupus Family Registry and Repository

Outcome Measures in Rheumatology

OMERACT develops and validates clinical and radiographic outcome measures in rheumatoid arthritis, osteoarthritis, psoriatic arthritis, fibromyalgia and other rheumatic diseases

OMERACT

Orthopaedic Research Society (ORS)

Advances the global orthopaedic research agenda through excellence in research, education, collaboration, communication and advocacy; offers educational and research funding opportunities

ORS

Orthopedic Research & Education Foundation (OREF)

Career development grants, clinical research grants, mentored clinical scientist grants, new investigator award, post-doctoral fellowships, resident training grants, resident research grants, medical research fellow grants, issue/disease-specific grants, collaborative research agenda in draft, which includes basic science research, clinical research and health services research

OREF grants

Osteoarthritis Research Society International (OARSI)

Released new evidence-based guidelines for the non-surgical treatment of osteoarthritis of the knee that, for the first time, are targeted to differing patient characteristics

Guidelines

Osteoarthritis Research Society International (OARSI) and Foundation for NIH (FNIH)

Osteoarthritis biomarkers project with FNIH; evaluate imaging and biochemical biomarkers to find more precise ways to measure the progression of disease and the effectiveness of new treatments

OA Biomarkers

Osteoarthritis Research Society International (OARSI) and Foundation for NIH (FNIH)

Food and Drug Administration Osteoarthritis Initiative; critical appraisal of certain fundamentals related to the design of clinical development programs

FDA OA Initiative


APPENDIX 1

Patient Reported Outcomes Measurement Information System (PROMIS)

Funded by the National Institutes of Health, PROMIS is a system of highly reliable, valid, flexible, precise and responsive assessment tools that measure patient-reported health status

About PROMIS

Patients Like Me Osteoarthritis, rheumatoid arthritis and fibromyalgia patient-reported data and social network

Patients Like Me

Patients, Advocates and Rheumatology Teams Network for Research and Service (PARTNERS)

Pediatric rheumatic disease patient-powered research network (PPRN); members include CARRA, PR-COIN, Arthritis Foundation and Lupus Foundation of America

PARTNERS

Pediatric Rheumatology Care & Outcomes Improvement Network (PR-COIN)

Creating a sustainable network that uses a registry database to measure our performance on measures of quality of care, learn more about the health status of juvenile idiopathic arthritis (JIA) patients in our care, as well as to inform future improvement projects

Quality

Reumafonds Arthritis research approach in Netherlands Research

Rheumatoid Arthritis Investigational Network (RAIN)

A group of rheumatologists who conduct investigator-initiated trials; database

RAIN

Rheumatology Research Foundation (RRF)

Goal A: workforce development, including preceptorships, education and training awards, and career development awards; Goal B: targeted research, including pilot grants and innovative research grants; Goal C: brand awareness; Goal D: financial resources; Goal E: organizational capacity

RRF Opportunities

Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS)

Clinical Data Research Network (CDRN) will collect arthritis data

SCILHS

Spondylitis Association of America

National patient registry on ankylosing spondylitis Research

Stanford University Arthritis, Rheumatism, and Aging Medical Information System (ARAMIS)

ARAMIS


The Vasculitis Patient-Powered Research Network (V-PPRN)

PCORI-funded research network including Vasculitis Foundation, Vasculitis Clinical Research Consortium, patient groups and others

Vasculitis PPRN

University of Alabama Birmingham

Treatment Efficacy and Toxicity in Rheumatoid Arthritis Database and Repository (TETRAD); complete; seeking funds to continue

TETRAD


Consortium for the Longitudinal Evaluations of African-Americans with Early Rheumatoid Arthritis (CLEAR)

CLEAR


Treatment of Early Aggressive Rheumatoid Arthritis (TEAR); included registry; study complete

TEAR

University of California San Francisco

Sjögren’s Syndrome International Collaborative Clinical Alliance (SICCA); collaborative group of scientists

SICCA

University of Nebraska Medical Center

Veterans Affairs Rheumatoid Arthritis (VARA) registry

VARA

U.S. Bone and Joint Initiative Advocacy and promotion; goals are to increase funding for musculoskeletal research, promote health service research, patient-centered integrated systems and musculoskeletal education in curriculum for medical schools

USBJI Mission

Vasculitis Clinical Research Consortium

Contact registry of people willing to be involved in research and clinical trials

Vasculitis Consortium

Vasculitis Clinical Research Consortium

Runs a mentoring program as part of the NIH Rare Diseases Clinical Research Network’s funding model

Vasculitis Mentoring

World Health Organization Economic Burden of Disease WHO Disease Burden

World Health Organization WHO Guide to Identifying the Economic Consequences of Disease and Injury

WHO Impact Guide


In our scientifi c strategic planning process, the Arthritis Foundation identifi ed organizations that are focused on fi nding a cure for a disease or health problem that is not arthritis. A summary of selected organizations is provided in this appendix.

ORGANIZATION DESCRIPTION REFERENCE

Alzheimer’s Association

International new investigators program Alzheimer New Investigators

Alzheimer’s Association

Coalition Against Major Diseases with Critical Path Institute Alzheimer Critical Path

Alzheimer’s Drug Discovery Foundation

Venture philanthropy program; fund preclinical research and early-stage clinical trials; focus on new drug targets

Alzheimer Drug Discovery

American Association for Cancer Research

Emerging scientists program for high school and undergraduate students; creating communities around key disciplines; funding promising projects; convening thought leaders; celebrating key contributors; collaborating with organizations

AACR Complete Life Cycle

American Brain Tumor Association

Early career scientist grants; new drug development and repurposed drugs; targeted therapies, signaling pathways, gene expression; personalized medicine; imaging; vaccines and immunotherapy; improving survivorship

Brain Tumor Grants

American Cancer Society

Intramural research in epidemiology and surveillance; extensive extramural research program

Cancer Society Intramural

American Diabetes Association

Pathways to Stop Diabetes: an effort to inspire and support a new generation of diabetes researchers

Diabetes 100 Brilliant Researchers

American Federation for Aging Research

Training grants, young investigator awards, pilot studies for independent research

AFAR Funding

American Heart Association

Two of its 12 Essential Elements: 1) Ensure funding mechanisms for investigators at all career stages and across disciplines; 2) Provide programs which, in addition to supporting the pursuit of research in question, also facilitate expansion of investigator skills

Heart 12 Essential Elements

American Physical Therapy Association

Will be launching an outcomes registry in 2015 APTA Registry

Appendix | 2

Organizations to Find a Cure

Autism Speaks Goals to promote cross-disciplinary cooperation; fund research; organize research summit meetings; establish standards for data collection and management; fi ve focus areas for science portfolio: etiology, biology (mechanisms of disease), diagnosis, treatment, dissemination

Autism Strategy

Avon Foundation for Women

Provides safety net access-to-care programs for medically underserved; outreach programs focused on education and screening for breast cancer; funds scientifi c research into causes, prevention, tests to assess risk, and treatment

Avon Foundation

Bill and Melinda Gates Foundation

How to identify, support and shape scientifi c research that can have the most impact and to accelerate the translation of scientifi c discoveries into solutions that improve people’s health and save lives

Discovery and Translational Sciences

Breast Cancer Research Foundation

Provides seed funding for clinical or translation research; research proposals are invited by Scientifi c Advisory Board; focus is on cause and cure

BCRF Mission

BrightFocus Foundation

Provides initial funding for highly innovative ideas in Alzheimer’s and blindness research; allows scientists to gather preliminary evidence so larger grants can be received from NIH or industry

BrightFocus

Bruner Foundation How to use logic models for philanthropy Logic Models

Burroughs Wellcome Fund

The Burroughs Wellcome Fund's grantmaking strategies support biomedical scientists at the beginning of their careers and areas of science that are poised for signifi cant advancement but are currently undervalued and underfunded

Burroughs Grant Program

Cancer Research Institute

Funds the full spectrum of research from basic science to clinical trials; mechanisms from fellowships to consortia; supports and hosts conferences and meetings; includes partnerships with other nonprofi ts

CRI Strategy


National Program of Cancer Registries CDC Cancer Registries

Children’s Tumor Foundation

Disease registry Tumor Foundation Registry

Children’s Tumor Foundation

Young investigator awards CTF Young Investigator


APPENDIX 2

Circle of Service Foundation

Provides community services and education; funds medical research by invitation only

Circle of Service

Citizens United for Research in Epilepsy (CURE Epilepsy)

Provides seed grants for novel research in the following areas: prevention, cure, elimination of treatment side effects, reversal of deficits caused by seizures; special program in Sudden Unexpected Death in Epilepsy

CURE Epilepsy Research

Conquer Cancer Foundation

Funds breakthrough cancer research conducted by physician-scientists at all career stages

Conquer Cancer Methodology

Council on Foundations

Comparison of grant-making strategies Grantmaking Strategies

Critical Path Institute Brings scientists from the Food and Drug Administration (FDA), industry and academia together to collaborate and improve the drug development and regulatory process for medical products

Critical Path

Cystic Fibrosis Foundation

Cystic Fibrosis Foundation Therapeutics, Inc., subsidiary to advance drug development

CFFT

Damon Runyon Cancer Research Foundation

Four programs aimed at encouraging and advancing the work of early career cancer researchers

Damon Runyon Early Career

Department of Health and Human Services

Funding of demonstration projects and evaluation of telehealth services, direct services provision, Medicare payment for telehealth services, and regulation of remote devices and services

Telehealth Report

Donaghue Foundation Promotes knowledge uptake; builds networks and collaborations; funds a diverse portfolio of projects on mechanisms of disease and improving clinical treatments; public health initiatives to prevent illness

Donaghue Mission

Doris Duke Charitable Foundation

Clinical research career ladder funding from high school to senior investigators

Doris Duke Goals


Ellison Medical Foundation

Grant focus on basic biology of aging; giving scientists the freedom, flexibility and resources to take risks; senior scholar award; new scholar award (awards granted in first three years after receiving doctoral degree); neuroscience award; conferences and workshops

Ellison New Scholar

Faster Cures The Research Acceleration and Innovation Network (TRAIN); nonprofit, industry, investor partnerships

TRAIN

Faster Cures Collaboration Inventory TRAIN Inventory

Faster Cures A center of the Milken Institute; goal is to save lives by speeding up and improving the medical research system

Faster Cures

Fondation Leducq International collaborations in cardiovascular and neurovascular disease; funds Transatlantic Networks of Excellence

Leducq

Foundation Fighting Blindness

Organization 2016 goal is to add 10 new human clinical trials to translational research portfolio; focus is to identify new therapies; improve diagnoses; provide education, awareness, support; attract broad support

Strategic Plan

Physical Therapy Foundation

Funds and publicizes physical therapy research that determines the scientific basis and value of services intended to optimize physical functioning by physical therapists, and to develop the next generation of researchers

Scientific Review Committee

Georgia Regents University Augusta

Medical College of Georgia Center for Telehealth Georgia Telehealth

Gerber Foundation Novice researcher program Gerber Novice Program

Grand Challenges in Global Health

Grand Challenges is a family of initiatives fostering innovation to solve key global health and development problems

Grand Challenges

Health Research Alliance

Considers the future of biomedical research in light of major changes in funding streams for research within academic health centers, considers the role of private funders in training the next generation of biomedical scientists, shares best practices for grantmaking

HRA


APPENDIX 2

Health Resources in Action

The Medical Foundation, a division of HRiA is a grantmaking services company

HRIA

Heart Rhythm Society Funds post-doctoral research fellowships HRS Postdocs

Helmsley Charitable Trust

Applications for grants are by invitation only; Trust has partnerships with grantees; focuses on basic medical research, IBD and Crohn’s disease, rural health care, type 1 diabetes and building the biomedical research infrastructure

Helmsley Programs

Howard Hughes Medical Institute

Supports people, not projects; solves difficult, long-range questions

HHMI

Hydrocephalus Association

The Association’s 2010-2014 research strategic plan priorities are to stimulate the hydrocephalus research ecosystem; identify and improve clinical best practices; improve understanding of etiology; they fund seven young investigators/year

Hydrocephalus young investigators

Iaccoca Family Foundation

Funds research to find a cure for type I diabetes; the focus is on funding novel projects to accelerate a cure and inform understanding of the disease by a related mechanism of action

Iacocca Grants

Institute of Medicine A blueprint for transforming prevention, care, education and research to relieve pain in America

Blueprint for Relieving Pain

Institute of Medicine A guide for immediate and precise action to reduce the burden of all forms of chronic illness through the development and implementation of cross-cutting strategies to help Americans live well

Living Well With Chronic Disease

International Science of Team Science Conference

Strategies for facilitating team science Advancing Team Science

Juvenile Diabetes Research Foundation

Funds the range of projects from early exploratory research to proof of concept clinical trials to regulatory approval and reimbursement; international funder; has training and early-career development grants

JDRF Grant Descriptions


Kavli Foundation Astrophysics, cosmology, nanoscience, neuroscience and theoretical physics; programs include Frontiers of Science, science meetings, science communication, science journalism, endowed professorships and prizes for achievement

Kavli

Klarman Family Foundation

Funds grants in the biological basis of health and illness, with a special interest in psychiatric diseases;.other areas of focus are to strengthen the Jewish community and expand access to services and opportunities in Boston

Klarman Focus

Leukemia & Lymphoma Society

Areas of research focus include diagnosis and treatment of blood cancers; funding academic research; therapy acceleration program; funding special focused initiatives; developing new therapies through partnerships with pharmaceutical companies and venture capitalists

LLS Mission

LIVESTRONG Foundation

Original model of patient-centered cancer care in partnership with the Dell Medical School; an innovative enterprise designed by cancer patients and survivors to deliver patient-centered care, the best teaching practices and collaborative research

Patient-Centered Care

LUNGevity Funds early-career and established researchers; scientific focus on early detection and targeted treatment, including customized genetic intervention

Lungevity commitment

Lymphoma Research Foundation

Strategy to support young investigators; funds accomplished researchers who will accelerate development of therapeutics and answer fundamental questions; pursues research in disease-specific focus areas; creates activities and resources to enhance research endeavor

Lymphoma Mentoring

March of Dimes Starter Scholar research awards (independent researchers no more than eight years post-doc)

March of Dimes Grants

Melanoma Research Alliance

Detailed strategic plan available, with 25 specific priorities; three main areas of scientific plan: prevention, diagnosis and staging, and treatment

MRA Strategic Plan

Michael J Fox Foundation

Speeding treatments and cure for Parkinson’s disease Fox Foundation


APPENDIX 2

MPN Research Foundation

Grant program to build on new discoveries; accepts proposals in five focus areas; challenge program

MPN Strategy

Ms. Foundation for Women

Effective strategies for grantmaking with equity and inclusion Collaborative Fund Model

Mt Sinai Health Care Foundation

Academic medicine and bioscience, health policy Mt Sinai

Multiple Myeloma Research Foundation

The Multiple Myeloma Research Consortium (MMRC): Advancing Promising Treatments for People with Multiple Myeloma

MMRC

Multiple Myeloma Research Foundation

Genomics initiative and tissue bank MMRF Tissue Bank

National Center for Advancing Translational Sciences

Catalyzes the generation of innovative methods and technologies to enhance the development, testing and implementation of diagnostics and therapeutics

NCATS

National Center for Complementary and Alternative Medicine

NCCAM’s current strategic plan, Exploring the Science of Complementary and Alternative Medicine: Third Strategic Plan 2011–2015, presents a series of goals and objectives to guide NCCAM in determining priorities for future research on complementary health approaches

NCCAM Strategic Plan

National Health Council

The mission is to provide a united voice for people with chronic diseases and disabilities

NHC

National Prevention, Health Promotion and Public Health Council

Metrics for a prevention-oriented society where all sectors recognize the value of health for individuals

National Prevention Strategy

National Psoriasis Foundation

Strategic goal #1: Accelerate discovery to cure psoriatic disease

Psoriasis Strategic Plan

Nature Research funding should strive for a balanced portfolio Grand Challenge

New York Stem Cell Foundation

Post-doc fellowship program; early-career investigators NYSCF Innovators


North American Association of Central Cancer Registries

Standards for registry operations, etc. NAACCR

North American Association of Central Cancer Registries

NAACCR Strategic Management Plan NAACCR Strategic Plan

Pancreatic Cancer Action Network

A comprehensive strategy that includes early-career scientist grants

PanCan Strategy

Parent Project Muscular Dystrophy

Global Investment For Therapeutics to End Duchenne (GIFTED) program

GIFTED

Parkinson’s Disease Foundation

Invests in teams at leading research centers (long-term support for basic, translational and clinical research); supports international research grants program (advance knowledge of Parkinson’s), mentored fellowships, training opportunities and career development grants

PDF Funding

Patient Research Connection: PI-Connect.

Immune deficiency patient-powered research network PI-Connect

Patient-Centered Outcomes Research Institute (PCORI)

Framework to guide funding of comparative clinical effectiveness research that will give patients and those who care for them the ability to make better-informed health decisions

Research Agenda

Pershing Square Sohn Cancer Research Institute

Prize for young investigators; Fellowship with Damon Runyon Pershing Square Initiatives

Pew Charitable Trusts Early career development through Scholars program Pew Biomedical Scholars

Physicians’ Services Incorporated Foundation

Educational fellowships; resident research grants and prizes; translational research fellowships

PSIF Funding Programs

Rita Allen Foundation Young leaders in science and social innovation awards; the Foundation identifies other organizations to support

Rita Allen Grants


APPENDIX 2 | Organizations to Find a Cure

Simons Foundation Mathematics and Physical Sciences grant program; multi-institutional collaborative programs in life sciences; autism research initiative; education and outreach

Simons Foundation

Susan G. Komen Komen supports a range of grants from training to large promise grants; they are transitioning the program from basic science grants to treatment, early detection and prevention; Komen supports investigator-initiated projects, sponsored programs, international research grants and international community health grants

Komen Grant Program

Susan G. Komen Funding breast cancer projects that have the potential to advance the fi eld and have an impact on patients as rapidly as possible

Research Accomplishments

TCC Group How to design strategic grantmaking programs that make a high impact

Funding for Impact

The William and Flora Hewlett Foundation

Outcome focused grantmaking: a hard-headed approach to soft-hearted goals

Outcome Focused Grantmaking

V Foundation for Cancer Research

Scholar program for young investigators V Foundation Funding

W. Garfi eld Weston Foundation

Canadian organization focused on education, land conservation, science in Canada’s North, neuroscience translational research and other trustee-initiated grants

Weston Mandate

W. M. Keck Foundation Grants open to early career investigators; undergraduate education program

Keck Grant program

Robert A. Colbert, MD, PhDDr. Colbert is Chief, Pediatric Translational Research Branch (PTRB), Deputy Clinical Director, National Institute of Arthritis and Musculoskeletal and Skin Diseases. The Colbert lab aims to understand the pathogenesis of chronic infl ammation and its impact on structural remodeling of bone in spondyloarthritic diseases such as ankylosing spondylitis. Before coming to NIAMS, Dr. Colbert served as the director of the Division of Rheumatology at Cincinnati Children’s Hospital Medical Center of the University of Cincinnati College of Medicine. The PTRB is researching the pathogenesis of spondyloarthritis and related disorders, including ankylosing spondylitis, particularly with childhood onset. As chief of the PTRB, Dr. Colbert is developing a research program that will utilize animal models, coupled with patient-oriented translational studies, to characterize the mechanisms responsible for initiating and promoting infl ammation and dysregulated bone formation in these disorders.

Joseph Craft, MDDr. Craft is Paul B. Beeson Professor of Medicine and Chief of the Section of Rheumatology, and Professor of Immunobiology, at the Yale University School of Medicine. At Yale, he teaches graduate and medical students, and directs a research laboratory devoted to understanding T lymphocyte differentiation and function in normal and autoimmune responses. Dr. Craft is Director of the Investigative Medicine Program at Yale, a unique program designed to provide PhD training for physicians. He is former chair of the Immunological Sciences Study Section at NIH, and a former Pew Scholar in the Biomedical Sciences. He is a co-founder of L2Diagnostics, a company in New Haven formed in partnership with Yale University and devoted to discovery of new diagnostics in vector-borne diseases and of targets for vaccine development.

Helen Emery, MBBSDr. Emery currently serves as a member of the Arthritis Foundation’s National Board of Directors; Chair of the Research Advisory Committee; Chair, Research and Strategic Planning Task Team; and a member of the Great West Region Board of Directors. She is Professor Emeritus of Pediatrics at the University of Washington and Seattle Children’s Hospital. Her academic focus has been the education of residents, fellows and community physicians, as well as improving the outcomes of children with rheumatic diseases through application of basic and translational research. Dr. Emery remains committed to fi nding a cure for both the children she sees and the millions of others affected by the over 100 forms of arthritis.

Farshid Guilak, PhDDr. Guilak is the Laszlo Ormandy Professor and Vice-Chair for Research in the Department of Orthopaedic Surgery at Duke University Medical Center and is the Director of Orthopaedic Research, and a longtime and very active volunteer for the Arthritis Foundation. Dr. Guilak’s research focuses on the study of osteoarthritis. He leads a research group of nearly 40 students, post-docs and staff. His laboratory has used a multidisciplinary approach to investigate the role of biomechanical factors in the onset and progression of osteoarthritis, as well as the development of new pharmacologic and stem-cell therapies for this disease. He is the Editor-in-Chief of the Journal of Biomechanics, Associate Editor for Osteoarthritis & Cartilage, and serves on the editorial boards of seven other journals. He has won numerous national and international awards for his research and mentorship.

Appendix | 3

Research Advisory Committee


APPENDIX 3

Linda J. Sandell, PhDDr. Sandell is the Mildred B. Simon Professor and Director of Research in the Department of Orthopaedic Surgery and Director of the Center for Musculoskeletal Biology and Medicine at Washington University in St. Louis. She has been a leader in the field of orthopaedic research, pioneering the use of molecular biologic techniques, protein biochemistry, large screening technologies, microscopy and computational biology to study cell responses to cartilage cell injury and the regulation of gene expression in connective tissues. Her recent focus is on the areas of genetics and osteoarthritis. Dr. Sandell has authored more than 200 publications, in addition to three books and seven patents. She has been President of the Orthopaedic Research Society, the Histochemical Society and the Society for Matrix Biology. In 2010, she received the Women’s Leadership Award from the Orthopaedic Research Society and is currently Director of the OARSI OA Biomarkers Global Initiative and Immediate Past President of the Osteoarthritis Research Society International.

David Shuey, MSMr. Shuey is Chair Emeritus of the Arthritis Foundation’s National Board of Directors, and has served in numerous posts and positions as a volunteer for the Arthritis Foundation, both locally and nationally. During his tenure as Chair, Mr. Shuey biked coast-to-coast to honor his mother, and raise money and awareness for the Arthritis Foundation. Mr. Shuey is Executive Vice President and North America Practice Leader for The Willis Group, a leading risk and insurance management firm. His clients range from early-stage R&D companies to large pharmaceutical firms. Mr. Shuey has expertise in therapeutics, medical devices, generics, nutraceuticals, consumer products, contract research organizations, laboratories and contract manufacturing.

Chris Smith, MBAMr. Smith is Chief Executive Officer of the Arthritis Foundation’s Great Lakes Region. The region covers five states: Michigan, Ohio, Kentucky Pennsylvania and West Virginia. Today the Great Lakes Region carries out the mission of the Arthritis Foundation by advocating for people who have arthritis, offering programs and services that improve the lives of millions of people of all ages diagnosed with arthritis, as well as investing in cutting-edge research. Having built his career in nonprofit management, Mr. Smith is in his 30th year working for volunteer health agencies. As CEO, Mr. Smith serves on the Executive Cabinet for the national Arthritis Foundation with shared responsibility for setting policy, creating strategies and making recommendations on how best to carry out the strategic plan for the Foundation.

Kelli Thompson, Esq.Ms. Thompson is an attorney at Baker, Donelson, Bearman, Caldwell & Berkowitz, PC; she has practiced law for 25 years. She has significant experience in franchise law and litigation, business litigation and employment law and litigation. Ms. Thompson was diagnosed with rheumatoid arthritis in October 2001, and her husband was diagnosed with psoriatic arthritis in August 2002. Both families have a strong history of autoimmune diseases. She became involved with her local office of the Arthritis Foundation in 2006 and became a National Board of Directors member in 2011.

Research Advisory Committee

Rocky S. Tuan, PhDDr. Tuan is Distinguished Professor; Director, Center for Cellular and Molecular Engineering; Arthur J. Rooney, Sr. Chari and Executive Vice Chairman, Department of Orthopaedic Surgery; Associate Director, McGowan Institute for Regenerative Medicine; Director, Center for Military Medicine Research; Professor, Departments of Bioengineering and Mechanical Engineering and Materials Science at the University of Pittsburgh. Dr. Tuan has published more than 420 research papers, has lectured extensively, and is currently Editor of the developmental biology journal, BDRC: EMBRYO TODAY, and Founding Editor of STEM CELL RESEARCH AND THERAPY. Dr. Tuan directs a multidisciplinary research program that focuses on orthopaedic research as a study of the biological activities that are important for the development, growth, function and health of musculoskeletal tissues, and the translation of this knowledge to develop technologies that will regenerate and/or restore function to diseased and damaged skeletal tissues.

W. Hayes Wilson, MDDr. Wilson is Chair of the Division of Rheumatology at Piedmont Hospital in Atlanta. His special interests are in systemic lupus erythematosus, rheumatoid arthritis and scleroderma. He has been a longtime volunteer for the Arthritis Foundation, serving the Georgia office, Southeast Region, and the National Board of Directors.


Rowland W. Chang, MD, MPHDr. Chang is currently the Vice Chair of the Arthritis Foundation’s National Board of Directors and a member of the Greater Chicago Leadership Council; he also serves on several task teams and committees, both regionally and nationally. He is Professor of Preventive Medicine, Medicine (Rheumatology), and Physical Medicine and Rehabilitation, Director of the Institute for Public Health and Medicine, and Senior Associate Dean for Public Health at Northwestern University Feinberg School of Medicine. Dr. Chang is noted for 1) his clinical epidemiologic/health services research focused on the outcomes of rehabilitation and orthopaedic surgical treatments for persons with arthritis, and 2) his research on the determinants (most notably physical activity/sedentary behavior) of arthritis-associated functional limitation and disability in clinical and community populations.

Helen Emery, MBBSDr. Emery currently serves as a member of the Arthritis Foundation’s National Board of Directors; Chair of the Research Advisory Committee; Chair, Research and Strategic Planning Task Team; and a member of the Great West Region Board of Directors. She is Professor Emeritus of Pediatrics at the University of Washington and Seattle Children’s Hospital. Her academic focus has been the education of residents, fellows and community physicians, as well as improving the outcomes of children with rheumatic diseases through application of basic and translational research. Dr. Emery remains committed to fi nding a cure for both the children she sees and the millions of others affected by the over 100 forms of arthritis.

William Mulvihill, MEdMr. Mulvihill is Chair Emeritus of the Arthritis Foundation’s National Board of Directors, and over the years has served innumerable roles, both locally and nationally. He was previ-ously the Executive Vice President of the University of Cincinnati Foundation, where he successfully completed the Proudly Cincinnati $1 billion campaign. Mr. Mulvihill currently is Executive Director, University of Cincinnati Presi-dential Bicentennial Commission, overseeing the planning and execution of the university’s Bicentennial Celebra-tion in 2019. Diagnosed with rheumatoid arthritis in 1972, Mr. Mulvihill has dedicated nearly 40 years to improving the lives of people with arthritis through his volunteer efforts with the Arthritis Foundation and the Alliance for Lupus Research. He is a strong proponent of working with others to extend the Foundation’s reach and make a difference in the quality of life for many.

Susana Serrate-Sztein, MDDr. Serrate-Sztein is the National Institute of Arthritis and Musculoskeletal and Skin Diseases’ (NIAMS) liaison with the Arthritis Foundation. She is Director of the Division of Skin and Rheumatic Diseases at NIAMS, overseeing a large portfolio of grants and contracts dealing with etiology, pathogenesis, diagnosis, treatment and prevention of skin and rheumatic diseases. Before joining the National Insti-tutes of Health, Dr. Serrate-Sztein was Assistant Professor, Department of Pathology, Uniformed Services University of the Health Sciences, where she studied cytokine regulation of cell-mediated immune responses.

Appendix | 4

Research & Strategic Planning Task Team

David Shuey, MSMr. Shuey is Chair Emeritus of the Arthritis Foundation’s National Board of Directors, and has served in numerous posts and positions as a volunteer for the Arthritis Foundation, both locally and nationally. During his tenure as Chair, Mr. Shuey biked coast-to-coast to honor his mother, and raise money and awareness for the Arthritis Foundation. Mr. Shuey is Executive Vice President and North America Practice Leader for The Willis Group, a leading risk and insurance management fi rm. His clients range from early-stage R&D companies to large pharmaceutical fi rms. Mr. Shuey has expertise in therapeutics, medical devices, generics, nutraceuticals, consumer products, contract research organizations, laboratories and contract manufacturing.

Chris Smith, MBAMr. Smith is Chief Executive Offi cer of the Arthritis Foundation’s Great Lakes Region. The region covers fi ve states: Michigan, Ohio, Kentucky Pennsylvania and West Virginia. Today the Great Lakes Region carries out the mission of the Arthritis Foundation by advocating for people who have arthritis, offering programs and services that improve the lives of millions of people of all ages diagnosed with arthritis, as well as investing in cutting-edge research. Having built his career in nonprofi t management, Mr. Smith is in his 30th year working for volunteer health agencies. As CEO, Mr. Smith serves on the Executive Cabinet for the national Arthritis Foundation with shared responsibility for setting policy, creating strategies and making recommendations on how best to carry out the strategic plan for the Foundation.

Walter Smith, MSDr. Smith is currently a member of the Arthritis Foundation’s National Board of Directors and secretary of the Heartland Region Board of Directors. He is CEO of Confl uence Life Sciences, Inc., a biotech company based in St. Louis. He joined Confl uence after spending 28 years with pharma-ceutical companies Searle, Pharmacia and Pfi zer where he was VP of Research and Global Head for the Infl ammation/Immunology Therapeutic Area. Dr. Smith has led projects that have produced eight clinical candidates, six Investiga-tional New Drug applications and one New Drug Application. He has published more than 29 full-length manuscripts in peer-reviewed journals. He is a member of the American Thoracic Society and the American Society for Pharmacolo-gy and Experimental Therapeutics.

Janalee Taylor, CPNPMs. Taylor is currently a member of the Executive Commit-tee of the Arthritis Foundation’s National Board of Directors and has volunteered extensively for the Foundation at the local, regional and national levels. She is a Certifi ed Pediat-ric Nurse Practitioner and the Associate Clinical Director for the Division of Rheumatology at Cincinnati Children’s Hospital Medical Center. Ms. Taylor has been in pediatric rheumatology for 33 years, and is one of the co-leaders of the JIA and SLE Quality Improvement Team at Cincin-nati Children’s Hospital. Specifi c areas of interest include outcomes in pediatric rheumatic disease, psychosocial aspects of disease and self-management in chronic disease. She recently co-authored an evidence-based guideline for self-management in pediatric chronic disease.


The Arthritis Foundation appreciates the contributions of the following subject matter experts in the development of the Scientifi c Strategy 2015-2020.

Kelli AllenUniversity of North Carolina, Chapel Hill

Timothy G. BeukelmanChildhood Arthritis and Rheumatology Research Alliance (CARRA)

Carter BlakeyUnited States Department of Health and Human Services/Offi ce of the Assistant Secretary for Health/Healthy People

Helene BelisleArthritis National Research Foundation

Marc BoutinNational Health Council

S. Louis Bridges Jr.University of Alabama at Birmingham

Grant CannonUnited States Department of Veterans Affairs

Robert H. CarterNational Institutes of Health

Karen ChesbroughFoundation for Physical Therapy

Timothy CoetzeeNational Multiple Sclerosis Society

David CovallNorthside Arthritis Center

Alexis ColvinUnited States Tennis Association

Jeffrey R. CurtisUniversity of Alabama at Birmingham

Jennifer CutieViola Medica, Inc.

Vincent Del GaizoFriends of Childhood Arthritis and Rheumatology Research Alliance (CARRA)

George DodgeOrthopaedic Research Society

Sherine E. GabrielMayo Clinic

Seth GinsbergGlobal Healthy Living Foundation

Tibor GlantRush University

Charles G. HelmickCenters for Disease Control and Prevention

Michael HenricksonCincinnati Children’s Hospital Medical Center

Steve HoffmannFoundation for the National Institutes of Health

Sandy JonesCenters for Disease Control and Prevention

Elizabeth W. KarlsonBringham and Women’s Hospital

David KarpRheumatology Research Foundation

Salahuddin KaziUniversity of Texas Southwestern Medical Center

Virginia Byers KrausOsteoarthritis Research Society International (OARSI)

Gayle LesterNational Institutes of Health

Appendix | 5

Acknowledgments

Elena LosinaBrigham and Women’s Hospital

Jennifer MadansCenters for Disease Control and Prevention

Michele J. MaiersNorthwestern Health Sciences University

Lara MangraviteSAGE Bionetworks

Eryn MarchioloRheumatology Research Foundation

Phillip J. MeaseSeattle Rheumatology Associates

Kaleb MichaudArthritis Internet Registry (AIR)

Ted MikulsUniversity of Nebraska Medical Center

Esi Morgan DeWittPediatric Rheumatology Care & Outcomes Improvement Network (PR-COIN)

Allison MilutinovichDepartment of Defense

Rachel MyslinskiAmerican College of Rheumatology

Peter A. NigrovicChildhood Arthritis and Rheumatology Research Alliance (CARRA)

W. Benjamin NowellGlobal Healthy Living Foundation

Alexis Ogdie-BeattyUniversity of Pennsylvania

David S. PisetskyUnited States Bone and Joint Initiative (USBJI)

Ronald PoropatichUniversity of Pittsburgh

Johnathan RileyArthritis Society

Andrew RobertsonNational Psoriasis Foundation

Victoria Ruffi ngRheumatology Nurses Society

Laura SchanbergChildhood Arthritis and Rheumatology Research Alliance (CARRA)

Suzanne SchrandtPatient-Centered Outcomes Research Institute (PCORI)

Jasvinder SinghUniversity of Alabama at Birmingham

Melissa StevensFasterCures

Paul ThompsonUniversity of Massachusetts

Aricca Van CittersDartmouth College

Carl F. WareSanford-Burnham Medical Research Institute

Mary WheatleyRheumatology Research Foundation

James WitterNational Institutes of Health

Yelena YeshaUniversity of Maryland, Baltimore County

Thank you to the Arthritis Foundation staff and volunteers who provided support in the production of this document.


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Delivering on Discovery

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