icare epilepsy research portfolio analysis...the icare epilepsy portfolio analysis working group jan...
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ICARE Epilepsy Research Portfolio Analysis
ICARE meeting April 13, 2015
Goals for a comprehensive analysis
• to better inform the ICARE group and interested public about the fundinglandscape for epilepsy research
• to assess progress being made against the epilepsy research priorities asdefined by the 2014 NINDS Benchmarks and the recommendations from the 2012 IOM report “Epilepsy Across the Spectrum”.
• to help guide future funding priorities by highlighting current gaps andopportunities in epilepsy research
Analysis Design
• A working group was established to set the goals and design of the analysis
• Data was collected in four different areas:1. Award Information
project, investigator(s), award type and amount 2. Award Research Categories
research classification, type, and epilepsy type 3. NINDS 2014 Benchmark Areas4. IOM 2012 Recommendations
• All ICARE member organizations categorized their funded epilepsyresearch according to the four areas.
• Data contributed by: NIH, CDC, VA, PCORI, CURE, TS Alliance, AES, EF, andELC (Dravet Syndrome Foundation, Phelan-McDermid Syndrome Foundation and PCDH19 Alliance).
The ICARE Epilepsy portfolio analysis working group
Jan Buelow, EF David Eckstein, NCATS, NIH Margaret Jacobs, AES Mary Anne Meskis, Dravet Foundation – ELC Julie Milder, CURE Rob Moss, Seizure Tracker – ELC Steve Roberds, TSA
Tom Cheever, NINDS Brandy Fureman, NINDS Miriam Leenders, NINDS
Federal Funding Dramatically Outpaces Non-profit Funding for Epilepsy Research
Federal 95%
Nonprofit 5%
Federal vs Nonprofit Funding for Epilepsy Research in 2013 (total funding $148.9M)
Funding Agency/Organization Number of projects Total Funding
NIH 393 $136,385,334 CURE 41 $4,285,114 VA 15 $2,325,000 CDC 10 $2,212,135 PCORI 2 $1,684,562 EF 15 $730,000 AES 17 $547,500 Dravet Syndrome Foundation 6 $435,500 Tuberous Sclerosis Alliance 6 $174,322 Phelan-McDermid Syndrome Foundation 1 $50,000 PCDH19 Alliance 1 $30,000
Grand Total 507 $148,859,467
NINDS Supports Large Majority of NIH Funding
NINDS 80%
NIH-OD 6%
NCATS 4%
NHLBI 3%
NICHD 2%
NIDA 2% NIBIB
1%
NIAAA 1%
NIA 1%
CURE Supports Large Majority of Epilepsy Leadership Council (ELC) Funding
CURE 68%
EF 12%
AES 9%
Dravet Syndrome Foundation
7%
Tuberous Sclerosis Alliance
3%
Phelan-McDermid Syndrome Foundation
1%
PCDH19 Alliance
0.5%
81% of investigators have 1 project; 15% have 2 projects, 2% have 3, 1% have 4 and 1% have 5. 5% of investigators received >$1M in funding in FY2013
507 projects - 408 Investigators
Most Investigators are Supported by a Single Project
Most Funded Epilepsy Research is Basic
BASIC 53%
CLINICAL 28%
TRANSLATIONAL 19%
Most Funded Epilepsy Research is on Mechanism of Disease or Treatment
Mechanism of Disease
39%
Treatment 29%
Early Detection/ Diagnosis/ Prognosis
11%
Etiology 9%
Outcomes 5%
Model Systems 5% Prevention
2%
Largest Fraction of Funding goes to Research on Mechanism of Disease; Smallest to Prevention
0% 20% 40% 60% 80% 100%
Mechanism of Disease
Treatment
EarlyDetection/Diagnosis/…
Etiology
Model Systems
Outcomes
PreventionBasic
Translational
Clinical
$3.4M
$11.8M
$9.9M
$14.3M
$19.6M
$48.7M
$62.5M
Funding for Structured Training in Epilepsy Research is a Small Percentage of Overall Funding
Research 86%
Resources and
Infrastructure 8%
Training & Career
Development 6%
Educational Support
0.03%
Funding for Structured Training is Provided by a Subset of Organizations
0% 50% 100%
CDC
PCORI
Dravet…
Phelan-…
PCDH19 Alliance
TS Alliance
EF
VA
AES
CURE
NIH
Educational Support
Research
Resources and Infrastructure
Training & CareerDevelopment
6% ($6.9M)
15% ($0.65M)
65% ($0.36M)
10% ($0.23M)
18% ($0.14M)
19% ($0.03M)
Training and Career Development investment
$0 $1 $2 $3 $4 $5
EarlyDetection…
Etiology
Mechanismof Disease
ModelSystems
Outcomes
Treatment
Millions
Basic
Translational
Clinical
Majority of Training and Career Development Awards Support Basic Research
Investment of training awards by Research Classification and Type
Degree # of
trainees PHD 48
MD, PHD 18
MD 14
MS 3
BS 7
other 2
Degrees of training awardees
0%
1%
2%
3%
4%
5%
6%
7%
8%
9%
10%
$0
$1
$2
$3
$4
$5
$6
$7
$8
$9
$10
% o
f tot
al fu
ndin
g
K a
war
ds (
M)
NIH RCDC Epilepsy category K-award funding
NIH Epilepsy Career Development Award Funding Decrease Between FY2008 – FY2013
2008 2013
NIH RCDC Disease Category
K awards (M $)
% of total ($)
K awards (M $)
% of total ($)
Epilepsy $9.1 6.3% $5.7 4.4%
Stroke $11.6 3.9% $9.9 3.5%
Parkinson's $6.0 4.0% $5.6 4.1%
Brain Cancer $5.1 2.6% $6.1 2.2%
Multiple Sclerosis $5.0 3.0% $3.0 2.7%
ALS $0.9 2.1% $1.1 2.8%
Autism $4.1 3.5% $5.3 2.9%
NIH RCDC disease categories K-award funding
NIH Epilepsy Career Development Award Funding Decreased More Compared to Other Diseases
Active K award in FY 2008,2009 or 2010, and the award has ended before 2015. # of awardees % of awardees
NS Epilepsy K-awardees 53
applied for R01 funding 38 72% awarded R01 funding 29 55%
project focused on Epilepsy 22 76% of R01s
NIH R01 funding obtained by NS Epilepsy K Awardees
13% 6% 19% 37% 25%
100%
100%
4% 1% 95%
100%
25% 16% 11% 36% 12%
6% 3% 90%
59% 41%
18% 14% 68%
19% 32% 48%
40% 1% 6% 36% 17%
12% 5% 20% 37% 25% NIH
AES
Dravet F
EF
PCDH19
Phelan-M
TSA
CURE
VA
Total
CDC
PCORI
Neonatal/ Infantile
Childhood Adolescent/ Adult
Variable Age
Type not specified
Disparities in Funding for Different Epilepsy Types
Age of onset:
Research on the Causes and Consequences of Epilepsy Receives Less Funding
I. Understand the causes
21%
II. Prevent epilepsy and its
progression 29%
III. Improve treatment
options 34%
IV. Limit or prevent adverse consequences
11% N/A 5%
Area I (causes)
A B C D
Area II (epileptogenesis)
A B C D E
Area III (treatment)
A B C D E F G
Area IV (consequences) A B C D E
NIH
AES
Dravet F
EF
PCDH19
Phelan-M
TSA
CURE
VA
Disparities in Funding across Benchmark Areas
10.4% 5.3% 0.9% 3.4% 10.5% 17.5% 1.8% 1.0% 2.0% 4.6% 0.6% 2.8% 23.5% 2.9% 0.1% 6.6% 3.0% 1.2% 2.0%
3.8% 4.1% 6.7% 12.1% 4.9% 4.8% 16.9% 2.8% 4.8% 4.3% 25.5% 1.2% 8.2%
7.4% 2.8% 2.1% 1.5% 5.3% 11.4% 3.4% 14.0% 6.7% 6.0% 14.6% 6.5% 7.8% 3.5% 3.5% 3.5%
2.3% 4.0% 13.5% 2.3% 3.4% 8.2% 5.6% 57.4% 3.4%
21.3% 8.5% 15.3% 20.4% 8.1% 1.7% 1.7% 6.8% 4.3% 8.5% 3.4%
15.4% 6.2% 1.9% 21.6% 3.8% 14.4% 2.5% 15.4% 10.6% 3.8% 2.5% 1.9%
30.2% 17.1% 10.7% 38.9% 1.6% 1.6%
16.7% 16.7% 16.7% 16.7% 16.7% 16.7%
100.0%
10.2% 5.2% 1.0% 3.4% 10.1% 17.1% 2.0% 1.3% 2.6% 4.5% 0.6% 2.9% 22.7% 3.7% 0.0% 0.1% 6.3% 2.9% 0.1% 1.4% 1.9% Total
Little Funding Dedicated to 2012 IOM Recommendations
yes 4%
no 96%
1 2%
2 34%
3 35%
4 7%
5 10%
7 0.1% 9
12%
1. Validate and Implement Standard Definitions and Criteria for Epilepsy Case Ascertainment, Health Care and Community Services Use and Costs, and Quality-of-Life Measurement
2. Continue and Expand Collaborative Surveillance and Data Collection Efforts
3. Develop and Evaluate Prevention Efforts for Epilepsy and Its Consequences
4. Improve the Early Identification of Epilepsy and Its Comorbid Health Conditions
5. Develop and Implement a National Quality Measurement and Improvement Strategy for Epilepsy Care
7. Improve Health Professional Education About the Epilepsies 9. Improve and Expand Educational Opportunities for People with Epilepsy and Their Families
1) Epilepsy research funding spans a range of organizations with different missions and funding capacity
2) Federal funding significantly outpaces nonprofit research funding
3) Funding from federal sources is highly concentrated at NIH
4) Limited Support for structured training in epilepsy research; is this sufficient?
5) Epilepsy research funding is unevenly distributed among the Epilepsy Benchmark priorities
6) Epilepsy research funding for IOM Research Recommendations is very limited.
Conclusions from 2013 Funding Data