Approaches to Blue Ribbon Panel Recommendations: The Case of Lynch Syndrome

Approaches to Blue Ribbon Pannel Recommendations - The case of Lynch Syndrome. February 22-23, 2017. Rockville, MD

The National Cancer Institute (NCI) convened a Workshop on February 22–23, 2017, in Rockville, Maryland, to discuss issues related to cancer genetic testing approaches, current practices, and resources for case and family ascertainment in hereditary cancers, using Lynch syndrome as an example.

Lynch syndrome is a genetically inherited disorder that increases the risk of colorectal and endometrial cancers and several other malignancies. It is estimated that in the United States, up to 1 million people live with Lynch syndrome, but many are unaware of it. One approach recommended by the Cancer MoonshotSM Blue Ribbon Panel for identifying those with Lynch syndrome is testing of colorectal and endometrial cancers for specific markers. When the tumor test is abnormal, additional genetic testing and counseling is indicated to determine whether an individual has Lynch syndrome. If Lynch syndrome is diagnosed, then other family members could be tested.

During the Workshop, the Cancer MoonshotSM Blue Ribbon Panel Report recommendations on cancer prevention and early detection in individuals at high risk for cancer were reviewed, and discussion topics included health care delivery, gaps in current knowledge, and identification of resources needed to inform implementation.

The one-and-a-half-day Workshop included presentations and discussions on the following topics:

  • an overview of the Cancer MoonshotSM Blue Ribbon Panel recommendations
  • the patient/family perspective on living with Lynch syndrome
  • opportunities and challenges in various settings related to cancer registries and universal screening
  • Lynch syndrome testing approaches
  • health care delivery approaches to development, implementation, and evaluation

The Workshop took place from 8:00 a.m. to 5:00 p.m. ET on February 22, 2017, and from 8:00 a.m. to noon ET on February 23, 2017. The presentations were recorded and links to the webinar recording will be posted soon for each session.

Day 1: February 22, 2017

Time Topic and Speakers
7:30–8:25 a.m. Registration
8:25–8:30 a.m. Welcome
Kathy J. Helzlsouer, M.D., M.H.S.
Associate Director, Epidemiology and Genomics Research Program (EGRP), Division of Cancer Control and Population Sciences (DCCPS), NCI
8:30–8:50 a.m. Opening Remarks 
Douglas R. Lowy, M.D.
Acting Director, National Cancer Institute (NCI)

Lisa C. Richardson, M.D., M.P.H. Director, Division of Cancer Prevention and Control (DCPC), Centers for Disease Control and Prevention (CDC)
8:50–9:50 a.m. Session 1: Perspectives on Hereditary Susceptibility to Cancer
Moderator:
Kathy J. Helzlsouer, M.D., M.H.S.
Associate Director, Epidemiology and Genomics Research Program (EGRP), Division of Cancer Control and Population Sciences (DCCPS), NCI
8:50-9:10 Lynch Syndrome Overview
Patrick M. Lynch, J.D., M.D.
Professor, Department of Gastroenterology, Hepat & Nutr, MD Anderson Cancer Center
9:10-9:25 Patient / Family Perspective on Living with Lynch Syndrome
Andi Dwyer
Director of Health Promotion, Fight Colorectal Cancer
9:25-9:50 Discussion and Audience Response
Discussant:
C. Richard Boland, M.D. Professor of Medicine, University of California San Diego School of Medicine
9:50-10:10 a.m. Break
10:10 a.m.–12:10 p.m. Session 2: Registries and Universal Screenings: Opportunities and Challenges in Various Settings
Moderator:
Juan Rodriguez, M.P.H., M.S.
Epidemiologist, DCPC, CDC
10:10-10:30 International Experience
Nancy Baxter, M.D., Ph.D., F.R.C.S.C., F.A.C.R.S.
Professor of Surgery, University of Toronto
10:30-10:45 Colon Cancer Family Registry
Noralane M. Lindor, M.D.
Professor, Mayo Clinic

Mark A. Jenkins, Ph.D.
Director and Professor, Centre for Epidemiology & Biostatistics, The University of Melbourne
10:45-11:00 Lynch Syndrome Screening Network
Debra Duquette, M.S., C.G.C.
Adult Genetics/Genomics Coordinator, Michigan Department of Health and Human Services
11:00-11:15 Ohio CRC Universal Screening for Lynch Syndrome Results
Heather Hampel,M.S., L.G.C.
Licensed Genetic Counselor, Clinical Cancer Genetics Program and Professor, Division of Human Genetics, Department of Internal Medicine, The Ohio State University
11:15-11:30 Integrating Genetic Testing for Lynch Syndrome into Managed Care
Jessica Ezzell Hunter, Ph.D.
Assistant Investigator, Center for Health Research, Kaiser Permanente Northwest
11:30-12:10 Discussion and Audience Response
Discussant:
Karen H. Lu, M.D.
Professor, Department of Gynecologic Oncology, MD Anderson Cancer Center
12:10–1:10 p.m. Lunch on Your Own (cafeteria on site)
1:10–3:10 p.m. Session 3: Lynch Syndrome Testing Approaches
Moderator:
Asad Umar, D.V.M., Ph.D. Chief, Gastrointestinal and Other Cancers Research Group, Division of Cancer Prevention (DCP), NCI
1:10-1:40 Germline and Tumor-based Testing–MSI/IHC/sequencing
Stanley R. Hamilton, M.D.
Head, Division of Pathology and Laboratory, MD Anderson Cancer Center
1:40-1:55 Panel Tests and Variants of Uncertain Significance 
Zsofia Stadler, M.D.
Medical Oncologist, Memorial Sloan Kettering Cancer Center
1:55-2:10 Chemoprevention Trials in Lynch Syndrome
Sir John Burn, M.D., F.R.C.P., F.R.C.P.E., F.R.C.P.C.H., F.R.C.O.G., F.Med.Sci. Professor of Clinical Genetics and Chief Investigator, Cancer Prevention Project 3, Institute of Genetic Medicine, Newcastle University; Non-Executive Director, National Health Service England
2:10-2:30 Ethical Considerations in Screening for Hereditary Cancers
Lawrence Brody, Ph.D.
Director, Division of Genomics and Society, National Human Genome Research Institute
2:30-3:10 Discussion and Audience Response
Discussants: 
Zsofia Stadler, M.D., Medical Oncologist, Memorial Sloan Kettering Cancer Center

Stanley R. Hamilton, M.D.
Head, Division of Pathology and Laboratory, MD Anderson Cancer Center
3:10–3:30 p.m. Break
3:30–4:55 p.m. Session 4: Health Care Delivery: Approaches to Development, Implementation and Evaluation
Moderator:
David Chambers, D.Phil
Deputy Director, Implementation Science, DCCPS, NCI
3:30-3:50 Implementation Science
David Chambers, D.Phil
Deputy Director, Implementation Science, DCCPS, NCI
3:50-4:05 Public Health Perspective and Approach: State and SEER Registries
Juan Rodriguez, M.P.H., M.S.
Epidemiologist, DCPC, CDC
4:05-4:20 Meeting the Needs of Care Delivery (Workforce Availability)
Joy Larsen-Haidle, M.S., C.G.C.
Past President, National Society of Genetic Counselors
4:20-4:40 Discussion and Audience Response
Discussants:
Muin J. Khoury, M.D., Ph.D. Director, Office of Public Health Genomics, CDC

David Ransohoff, M.D.
Professor, Medicine; Clinical Professor, Epidemiology, University of North Carolina-Chapel Hill
5:00 p.m. Adjourn

Day 2: February 23, 2017

Time Topic and Speakers
8:00–8:05 a.m. Day 2 Welcome and Summary of Day 1
Asad Umar, D.V.M., Ph.D. Chief, Gastrointestinal and Other Cancers Research Group, DCP, NCI
8:05–10:35 a.m. Session 4: Health Care Delivery: Approaches to Development, Implementation and Evaluation (continued from Day 1)
Moderator:
Erica Breslau, Ph.D., M.P.H.
Program Director, Health Systems and Interventions Research Branch, Healthcare Delivery Research Program, DCCPS, NCI
8:05–9:05 a.m. CISNET Comparative Modeling
Iris Landsdorp-Vogelaar, Ph.D.
Assistant Professor, Department of Public Health, Erasmus MC
9:05–9:35 a.m. Challenges in Diverse Care Settings
Greg Feero, M.D., Ph.D.
Faculty and Research Director, Maine Dartmouth Family Medicine Residency
9:35–10:05 a.m. Payer / Economic / CER Perspective
Uri Ladabaum, M.D., M.S. Professor of Medicine, Senior Vice Chief
Director, Gastrointestinal Cancer Prevention Program, Division of Gastroenterology and Hepatology, Stanford University School of Medicine
10:05–10:35 a.m. Discussion and Audience Response
Discussants:
Ned Calonge, M.D., M.P.H.
President and CEO, The Colorado Trust and Associate Professor of Family Medicine, Colorado School of Medicine, University of Colorado, Denver and Associate Professor of Epidemiology, Colorado School of Public Health

Ravi Sharaf, M.D., M.S.
Associate Director of Clinical Cancer Genetics and Assistant Professor of Medicine, Northwell Health/Hofstra University School of Medicine
10:35–10:50 a.m. Break
10:50–11:50 a.m. Session 5: Setting Short- and Long-term Goals
Moderators:
Kathy J. Helzlsouer, M.D., M.H.S.
Associate Director, Epidemiology and Genomics Research Program (EGRP), DCCPS, NCI

Asad Umar, D.V.M., Ph.D.
Chief, Gastrointestinal and Other Cancers Research Group, DCP, NCI
11:50 a.m.–12:00 p.m. Meeting Summary & Next Steps
12:00 p.m. Adjourn

National Cancer Institute
Shady Grove Campus
9609 Medical Center Drive
Joseph F. Fraumeni, Jr., M.D. Conference Room (Room TE406/408/410)
Rockville, MD 20850

View map with nearby hotels, driving directions and public transportation options.

Kathy Helzlsouer, M.D., M.H.S
Division of Cancer Control and Population Sciences (DCCPS), NCI (Co-Chair)

Asad Umar, D.V.M., Ph.D.
Division of Cancer Prevention (DCP), NCI (Co-Chair)

Maria Isabel Achatz, M.D., Ph.D.
Division of Cancer Epidemiology and Genetics, NCI

Carmen Allegra, M.D.
Division of Cancer Treatment and Diagnosis, NCI

Erica Breslau, Ph.D., M.P.H.
DCCPS, NCI

Laura Brockway-Lunardi, Ph.D.
Center for Research Strategy (CRS), NCI

David Chambers, D.Phil
DCCPS, NCI

Barbara Dunn, M.D., Ph.D.
DCP, NCI

Emily Greenspan, Ph.D.
Center for Strategic Scientific Initiatives, NCI

Amy Kennedy, Ph.D., M.P.H.
CRS, NCI

Muin Khoury, M.D., Ph.D.
Office of Public Health Genomics, Centers for Disease Control and Prevention, and DCCPS, NCI

Juan Rodriguez, M.P.H., M.S.
Division of Cancer Prevention and Control, CDC

Nonniekaye Shelburne, C.R.N.P., M.S., A.O.C.N.
DCCPS, NCI

Elizabeth Woodhouse, Ph.D.
Division of Cancer Biology, NCI

Questions about this Workshop can be directed to NCILynchSyndrome@mail.nih.gov.