welcome! lssn meeting yawkey center dana-farber cancer institute october 27, 2012
TRANSCRIPT
Welcome!
LSSN MeetingYawkey Center
Dana-Farber Cancer InstituteOctober 27, 2012
Today’s Meeting Objectives
To bring together new and founding members of the Lynch Syndrome Screening Network (LSSN), to further address our emerging consortium’s goals, governance, data sharing, and educational resources
To present newly developed LSSN website and database; to present newly approved bylaws and governance structure of LSSN
To further refine key research questions to be addressed by
LSSN; and to finalize data sharing and publication/authorship protocols
To discuss implementation and dissemination models that are
relevant to LSSN and consider best model to utilize for LSSN
Today’s Participants Today’s meeting open to any institution to
attend at no cost (no registration fee!) Request only 2 people/institution to attend Notification and registration information for
today’s meeting first sent to LSSN listserv LSSN listserv includes institutions who are
eligible and applied for LSSN membership Prior two LSSN meetings by invitation
(September 2011 and February 2012)
Today’s Participants 93 online registrants
(as of October 25th) Majority genetic
counselors Registrants from 25
states and Ontario Representing
hospitals, universities, non-profits, state and federal government, advocacy organizations, industry, payers
An Enormous Thank You to:
Additional Thank You to:
Miranda Chergosky, Emory University School of Medicine Genetic Counseling Training Program
NCI Epidemiology and Genetics Research Program (EGRP)
LSSN Founding Board of Directors Cecelia Bellcross Heather Hampel Kory Jasperson Sarah Mange
Debi Cragun All of today’s participants!
“…no important health problem will be solved by clinical care alone, or research alone, or by public health alone- But rather by all
public and private sectors working together…..”
JS Marks. Managed Care 2005;14:p11Supplement on “The Future of Public Health”
Rationale for Creation of LSSN
EGAPP Lynch Syndrome Recommendation
Sufficient evidence to offer counseling & genetic testing for Lynch syndrome to patients newly diagnosed with colorectal cancer to reduce morbidity & mortality in relatives
Relatives of patients who test positive for Lynch could be offered counseling, testing &, if positive, increased colonoscopy
Evidence of benefit to the patient’s relatives
Gen Med 2009;11:35-41
Impact of 2009 EGAPP Lynch syndrome recommendation Data from membership
applications as of February 2012
58/62 institutions reported that EGAPP impacted their institutions
24/62 institutions reported EGAPP supported/justified existing screening protocols
23/62 institutions reported EGAPP provided basis for initiating Lynch screening protocol at their institution
Review of Previous Meetings
First In-person Meeting Held on September 2011 in Chicago, Illinois One-time limited funding from the CDC Office of Public Health Genomics received at
end of FY11• Concept drafted by Michigan Department of Community• Implemented by MDCH, The Ohio State University, Emory University, and Huntsman• Held meeting for 35 invited participants from multiple institutions and decided to
create LSSN Membership by institution (rather than individual)
• Pooled existing educational materials and screening protocols from participating institutions• Identified gaps in educational materials• Discussed creating educational materials based on readiness of institution to
implement universal screening Created online draft database to collect de-identified information from multiple
institutions Five subcommittees created; each led by LSSN Founding Board of Director
Education/website- Heather Hampel Database- Cecelia Bellcross Funding/communication- Deb Duquette Membership- Kory Jasperson Research/Publications- Sarah Mange
Review of Previous Meetings
Second In-Person Meeting Held in February 2012 at NIH/NCI in Bethesda Conference support received from NCI EGRP Held meeting for 35 individuals from multiple institutions who had attended September
2011 meeting LSSN Founding Board of Directors from MDCH, The Ohio State University, Emory
University and Huntsman Subcommittees met in-person and meet by conference calls
Membership Subcommittee- led by Kory Jasperson Drafted bylaws , governance, membership of LSSN
Website/education- led by Heather Hampel Presented draft of website content To be evaluated for aim of recent R01 awarded to Katrina Goddard at Kaiser Permanente
Northwest Created additional educational materials
Database- led by Cecelia Bellcross Continued to finalize database elements and entry procedures
Research/publication- led by Sarah Mange Identified key research/surveillance questions Drafted plan to solicit and respond to proposals Drafted publication/authorship protocols
Funding- led by Deb Duquette Consider Dissemination and Implementation NCI RO1
Updates Since February 2012 Logo created, approved and disseminated by LSSN
Board of Directors
Updates Since February 2012 LSSN website created and website host identified
http://www.lynchscreening.net
Updates Since February 2012 LSSN recognized as NCI EGRP-Supported Epidemiology
Consortia
Updates Since February 2012
LSSN Membership Communication Drafted process for communications when
voting by LSSN full member institutions LSSN Sharepoint site created by NCI LSSN listserv created and maintained by
Michigan Department of Community Health Any individual from institution that is eligible
and submitted LSSN application Currently 186 individuals on LSSN listserv Very active listserv!
Updates Since February 2012 Bylaws approved by LSSN membership
Full membership Affiliate membership Partners Certificates created and sent to LSSN
institutions
Updates Since February 2012 LSSN Database ready to be pilot tested
Updates Since February 2012
LSSN Members promote March 22, 2012 Lynch Syndrome Awareness Day
Supports Lynch Syndrome International efforts
NCI and CDC release announcements
LSSN authors CDC Genomics and Health Blog
Updates Since February 2012
LSSN Board of Directors featured on recent youtube video produced by Genetic Alliance about cascade screening
LSSN Board of Directors present at national conferences 2011 and 2012 accepted
presentations at Collaborative Group of Americas for Inherited Colorectal Cancers Conference
Invited speakers September 7, 2012 CDC New Strategies for Public Health Genomics conference
Invited speaker at 2013 ACMG conference
Updates Since February 2012
LSSN Support Request by National Organizations FORCE Testimony for FDA Patient-Focused Drug
Development initiative EGAPP on impact of Lynch Syndrome
Recommendation NSGC Payer Subcommittee
LSSN Included in Recent Funding Proposals NHGRI U01 submitted by New England Genetics
Collaborative/University of New Hampshire, Geisinger, The Ohio State University, Michigan Department of Community Health
AHRQ R24 submitted by NCHPEG
Funding Updates since February 2012
One-time end of FY12 funds from CDC OPHG to complete LSSN database received in September 2012
NCI R03 submitted to assist with database implementation and initial data analysis
NCI Dissemination and Implementation R01 to be submitted in 2013