Welcome! LSSN Meeting Yawkey Center Dana-Farber Cancer Institute October 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 25 th )  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:p11 Supplement on “The Future of Public Health”

LSSN Background and Updates Deb Duquette, MS, CGC Michigan Department of Community 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

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