Synergizing Epidemiologic Research on Rare Cancers

Workshop Agenda


Thursday, May 10 Topic
7:30 a.m. - 8:30 a.m. Registration
8:30 - 9:00 a.m. Welcome
Isis Mikhail, M.D., M.P.H., DrP.H.
Acting Chief, Clinical and Translational Epidemiology Branch, Epidemiology and Genetics Research Program
National Cancer Institute

Introduction
Stephen Groft, Ph.D.
Director, Office of Rare Diseases
National Institutes of Health

Opening Remarks
Deborah Winn, Ph.D.
Acting Associate Director, Epidemiology and Genetics Research Program
National Cancer Institute

Plenary Session
9:00 a.m. - 9:30 a.m. Childhood Cancer Research Network: An Effective Collaboration as a Model for Rare Cancer Research
Julie Ross, Ph.D., M.P.H.
Professor and Director, Division of Pediatric Epidemiology and Clinical Research, Department of Pediatrics
University of Minnesota

9:30 a.m. - 9:45 a.m. Life as a Cancer Patient: 10 Years as a Survivor of Carcinoid Syndrome
Bob Graham
Executive Editor, Insurance and Financial Advisor Monthly
9:45 a.m. - 10:00 a.m. Recommendations of the 2005 Epidemiology Workshop on Rare Cancers and Goals of This Meeting
Isis Mikhail, M.D., M.P.H., Dr.P.H.
Acting Chief, Clinical and Translational Epidemiology Branch, Epidemiology and Genetics Research Program
National Cancer Institute
10:00 a.m. - 10:15 a.m. Rare Cancers Research in the Epidemiology and Genetics Research Program
Deborah Winn, Ph.D.
Acting Associate Director, Epidemiology and Genetics Research Program
National Cancer Institute
10:15 a.m. - 10:30 a.m. Break
New Consortia Models
10:30 a.m. - 11:00 a.m. Establishing the Gliogene Consortium
Melissa Bondy, Ph.D.
Professor, Department of Epidemiology
The University of Texas M.D. Anderson Cancer Center
11:00 a.m. - 11:30 a.m. Ovarian Cancer Consortium
Joellen Schildkraut, Ph.D, M.P.H.
Professor of Community and Family Medicine, Division of Prevention Research
Duke University Medical Center
11:30 a.m. - 11:45 a.m. Endometrial Cancer Consortium
Sara Olson, Ph.D.
Assistant Attending Epidemiologist, Department of Epidemiology and Biostatistics
Memorial Sloan-Kettering Cancer Center
11:45 a.m. - 12:00 p.m. Urinary Bladder Cancer Consortium: Pre-Consortium Challenges
Nathaniel Rothman, M.D., M.P.H., M.H.S.
Senior Investigator, Occupational and Environmental Epidemiology Branch, Division of Cancer Epidemiology and Genetics
National Cancer Institute
12:00 p.m. - 1:00 p.m. Lunch
1:00 p.m. - 1:15 p.m. Working Groups Charge
Isis Mikhail, M.D., M.P.H., Dr.P.H.
1:15 p.m. - 2:45 p.m. Group I:

SARCOMA
Chair:
Sharon Savage, M.D.
Investigator, Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics
National Cancer Institute

Co-Chair: Vaurice Starks
Program Director, Epidemiology and Genetics Research Program
National Cancer Institute

Co-Chair/Writer: Shannon Lynch, M.P.H.
Program Analyst, Epidemiology and Genetics Research Program
National Cancer Institute

Group II:

ESOPHAGEAL CANCER
Chair:
Wong-Ho Chow, Ph.D.
Senior Investigator, Occupational and Environmental Epidemiology Branch, Division of Cancer Epidemiology and Genetics
National Cancer Institute

Co-Chair: Daniela Seminara, Ph.D., M.P.H.
Program Director Epidemiology and Genetics Research Program
National Cancer Institute

Co-Chair/Writer: Keith Richardson, B.A.
Research Associate Epidemiology and Genetics Research Program
National Cancer Institute

Group III:

LIVER (HEPATOBILIARY) CANCER
Chair:
Katherine McGlynn, Ph.D., M.P.H.
Investigator, Hormonal and Reproductive Epidemiology Branch, Division of Cancer Epidemiology and Genetics
National Cancer Institute

Co-Chair: Virginia Hartmuller, Ph.D., R.D.
Acting Chief, Modifiable Risk Factors Branch Epidemiology and Genetics Research Program
National Cancer Institute

Co-Chair/Writer: Stephanie Eber, M.P.H.
Associate Communications Coordinator Epidemiology and Genetics Research Program
National Cancer Institute

Group IV:

MULTIPLE MYELOMA
Chair:
Dalsu Baris, M.D., Ph.D.
Staff Scientist, Occupational and Environmental Epidemiology Branch, Division of Cancer Epidemiology and Genetics
National Cancer Institute

Co-Chair: Mukesh Verma, Ph.D.
Acting Chief, Host Susceptibility Factors Branch & Methods and Technologies Branch, Epidemiology and Genetics Research Program
National Cancer Institute

Co-Chair/Writer:Brenda Birmann, Sc.D.
Instructor, Channing Laboratory, Department of Medicine Brigham and Women's Hospital and
Harvard Medical School

2:45 p.m. - 3:15 p.m. Break
3:15 p.m. - 3:30 p.m. Cohort Consortia and Epidemiologic Research on RareCancers
Patricia Hartge, M.A., Sc.D.
Office of the Director, Division of Cancer Control and Population Sciences
National Cancer Institute
3:30 p.m. - 3:45 p.m. Resources for Population-Based Research on Rare Cancers: Residual Tissue Repositories
Marsha Reichman, Ph.D.
Acting Chief, Cancer Statistics Branch Surveillance Research Coordinator, Surveillance Research Program
National Cancer Institute
3:45 p.m. - 4:45 p.m. PANEL: Rare Cancers Working Groups Report Backs
3:45 p.m. - 4:00 p.m. Sarcoma Working Group
Chair: Sharon Savage, M.D.
4:00 p.m. - 4:15 p.m. Esophageal Cancer Working Group
Chair: Wong-Ho Chow, Ph.D.
4:15 p.m. - 4:30 p.m. Liver (Hepatobiliary) Cancer Working Group
Chair: Katherine A. McGlynn, Ph.D, M.P.H.
4:30 p.m. - 4:45 p.m. Multiple Myeloma Working Group
Chair: Dalsu Baris, M.D., Ph.D
4:45 p.m. - 5:00 p.m. Discussion
5:00 p.m. Adjourn

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Friday, May 11 Topic
7:30 a.m. - 8:30 a.m. Registration and Refreshments
8:30 a.m. - 8:35 a.m. Welcome
Deborah Winn, Ph.D.
8:35 a.m. - 9:05 a.m. Genetic Association Studies in Clinically Important Subtypes of Breast and Prostate Cancer: Lessons from the Breast and Prostate Cancer Consortium (BPC3)
Heather Spencer Feigelson, Ph.D., M.P.H.
Strategic Director of Genetic Epidemiology, Department of Epidemiology and Surveillance Research
American Cancer Society
9:05 a.m. - 9:15 a.m. Working Groups Charge
Isis Mikhail, M.D., M.P.H., Dr.P.H.
Go to Assigned Groups (4 Rooms)
9:15 a.m. - 10:45 a.m. Methods and Strategies Working Groups

Group I:

Chair:Graham Colditz, M.D., Dr.P.H.
Niess-Gain Professor, Department of Surgery
Associate Director, Prevention and Control
Alvin J. Siteman Cancer Center
Washington University School of Medicine

Co-Chair: Francine Laden, Sc.D.
Assistant Professor, Department of Environmental Health
Harvard School of Public Health

Co-Chair/Coordinator: Leah Sansbury, Ph.D., M.S.P.H.
Program Director, Epidemiology and Genetics Research Program
National Cancer Institute

Group II:

Chair: Wendy Cozen, D.O., M.P.H.
Associate Professor, Department of Preventive Medicine, Keck School of Medicine and Norris Comprehensive Cancer Center
University of Southern California

Co-Chair: Robert Greenlee, Ph.D., M.P.H.
MESA Lead Scientist, Epidemiology Research Center
Marshfield Clinic Research Foundation

Co-Chair/Coordinator: Britt Reid, D.D.S., Ph.D.
Program Director, Epidemiology and Genetics Research Program
National Cancer Institute

Group III:

Chair: David Hunter, M.B.B.S., M.P.H., Sc. D.
Vincent L. Gregory Professor in Cancer Prevention, Department of Epidemiology and Nutrition
Harvard School of Public Health

Co-Chair: Jill Barnholtz-Sloan, Ph.D.
Assistant Professor, Case Comprehensive Cancer Center
Case Western Reserve University School of Medicine

Co-Chair/ Coordinator: Sheri Schully, Ph.D.
Program Director, Epidemiology and Genetics Research Program
National Cancer Institute

Group IV:

Chair:Sara Strom, Ph.D.
Associate Professor, Department of Epidemiology, Division of Cancer Prevention
The University of Texas M.D. Anderson Cancer Center

Co-Chair: Sholom Wacholder, Ph.D.
Senior Investigator, Biostatistics Branch, Division of Cancer Epidemiology and Genetics
National Cancer Institute

Co-Chair/Coordinator: Shannon Lemrow, Ph.D.
Program Director, Epidemiology and Genetics Research Program
National Cancer Institute

10:45 a.m. - 11:00 a.m. Break - Return to Main Conference Room
11:00 a.m. - 11:15 a.m. Genome Wide Association and Rare Cancers
Robert Hoover, M.D., Sc.D.
Director, Epidemiology and Biostatistics Program, Division of Cancer Epidemiology and Genetics
National Cancer Institute
11:15 a.m. - 11:30 a.m. Utilizing Informatics to Foster Collaboration and Networking: Challenges and Opportunities
Peter Schad, Ph.D.
Health Informatics Coordinator, Division of Cancer Control and Population Sciences
National Cancer Institute
11:30 a.m. - 11:45 a.m. Epidemiology of Hepatocellular Carcinoma
Manal Hassan, M.D., Ph.D.
Assistant Professor, Department of Gastrointestinal Medical Oncology
The University of Texas M. D. Anderson Cancer Center
11:45 a.m. - 12:00 p.m. International Tumor Registries
Brenda Edwards, Ph.D.
Associate Director, Surveillance Research Program
National Cancer Institute

Lynn Ries, M.S.
Health Statistician, Surveillance Research Program
National Cancer Institute

12:00 p.m. - 1:00 p.m. Lunch
1:00 p.m. - 1:30 p.m. Rare Diseases Clinical Research Network (RDCRN): A Network of Consortia and the Role of Data Technology Coordinating Center (DTCC)
Rashmi Gopal-Srivastava, Ph.D.
Director, Extramural Research Program, Office of Rare Diseases
National Institutes of Health

Audrey Shor, Ph.D., M.P.H.
Research Associate, Department of Pediatrics
University of South Florida

1:30 p.m. - 1:45 p.m. Consumer Advocates in Research and Related Activities (CARRA) Program
Richard Gorlick, M.D.
Associate Professor of Pediatrics and Molecular Pharmacology
Albert Einstein College of Medicine
Vice Chairman, Division Chief Department of Pediatrics Hematology/Oncology
The Children's Hospital at Montefiore
1:45 p.m. - 2:00 p.m. Role of Advocacy Groups
Nancy O'Hagan, J.D.
President and Founder Caring for Carcinoid Foundation
2:00 p.m. - 2:15 p.m. Studies of Rare Cancers
Sholom Wacholder, Ph.D.
Senior Investigator, Biostatistics Branch, Division of Cancer Epidemiology and Genetics
National Cancer Institute
2:15 p.m. - 2:30 p.m. Break
2:30 p.m. - 3:30 p.m. PANEL: Methods and Strategies Working Groups Report Backs
2:30 p.m. - 2:45 p.m. Working Group I
Chair: Graham Colditz, M.D., Dr.P.H.
2:45 p.m. - 3:00 p.m. Working Group II
Chair: Wendy Cozen, D.O., M.P.H.
3:00 p.m. - 3:15 p.m. Working Group III
Chair: David Hunter, M.B.B.S., M.P.H., Sc.D.
3:15 p.m. - 3:30 p.m. Working Group IV
Chair: Sara Strom, Ph.D.
3:30 p.m. - 3:45 p.m. Discussion
3:45 p.m. - 4:00 p.m. Closing Remarks: The Future of Rare Cancer Epidemiology Research at EGRP: Where to Go From Here?
Deborah Winn, Ph.D.
Acting Associate Director, Epidemiology and Genetics Research Program
National Cancer Institute
4:00 p.m. Adjourn

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