NCI Workshop on Broadening Epidemiologic Data Sharing


Overview

The NCI Workshop on Broadening Epidemiologic Data Sharing, sponsored by the Epidemiology and Genomics Research Program (EGRP), will be held on October 8, 2014, at the NCI Shady Grove Campus in Rockville, Maryland.

Broad accessibility to peer-reviewed scientific publications has ushered in an era of open access in the 21st century. A 2013 memorandumExternal Web Site Policy from the Office of Science and Technology Policy directing Federal agencies to "support increased public access to results of research... funded by the Federal Government" suggests that broader access to scientific data will exist in the near future. There have been major advances in genomic data sharingExternal Web Site Policy with the establishment of new infrastructure, resources, and policies. However, additional approaches are needed for sharing individual-level epidemiologic data to enhance the pace of scientific progress in cancer epidemiology.

The purpose of this workshop is to identify opportunities and resolve barriers to facilitate controlled access by the scientific community to epidemiologic data from observational studies. The meeting will bring together key stakeholders from EGRP, the Division of Cancer Control and Population Sciences (DCCPS), the Division of Cancer Epidemiology and GeneticsExternal Web Site Policy (DCEG), the NCI Cohort Consortium, and the extramural scientific community. Attendees will be invited to engage in thoughtful and candid discussion about how to facilitate and support increased sharing of epidemiologic data.

The workshop will provide a forum to further the discussion on data sharing and corresponding challenges. The goals of the workshop are to:

  1. Identify challenges and possible solutions to sharing epidemiologic data;
  2. Identify key elements and potential epidemiologic data sharing model(s); and
  3. Identify resources needed to facilitate increased epidemiologic data sharing.

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Agenda

The workshop will begin at 8:30 a.m. and conclude at 5:00 p.m. on October 8, 2014. Below is a draft agenda for the workshop.

Time Topic
8:00 a.m. - 8:30 a.m. Registration
8:30 a.m. - 8:45 a.m.

Welcome and Opening Remarks
Robert Croyle, Ph.D.
Division of Cancer Control and Population Sciences (DCCPS), National Cancer Institute (NCI)

8:45 a.m. - 12:15 p.m. Morning Session
8:45 a.m. - 9:30 a.m.

Today's Scope and Definitions
James Lacey, Ph.D.
City of Hope Cancer Center

Facilitated Discussion
Moderator: Shannon K. Bell, M.S.W.
Office of Workforce Planning and Development (OWPD), NCI

9:30 a.m. - 10:45 a.m.

Panel: Insights From the Current Data Sharing Landscape and Lessons Learned
Benefits of Data Sharing to Scientific Discoveries
Ulrike Peters, Ph.D.
Fred Hutchinson Cancer Research Center

10:45 a.m. - 11:00 a.m.

Break
Attendees will be responsible for meals and/or light refreshments on their own and at their own cost. The government and/or government contractors are not involved in facilitating the provision of food and/or light refreshments.

11:00 a.m. - 12:15 p.m.

Challenges to Data Sharing in Cancer Epidemiology
Shannon K. Bell, M.S.W.
OWPD, NCI

12:15 p.m. - 1:00 p.m.

Lunch
Attendees are responsible for snacks/meals on their own/at their own cost. The government and/or its contractors are not involved in facilitating the provision of food. Attendees should report to their assigned breakout session indicated in the registration packet by 1:00 p.m.

1:00 p.m. - 5:00 p.m. Afternoon Session
1:00 p.m. - 3:00 p.m. Breakout Sessions: Approaches to Surmount Identified Challenges
Please refer to the registration information for your room assignment.
3:00 p.m. - 3:15 p.m.

Break
Attendees will be responsible for meals and/or light refreshments on their own and at their own cost. The government and/or government contractors are not involved in facilitating the provision of food and/or light refreshments.

3:15 p.m. - 4:45 p.m. Report Back to Group and Discussion
4:45 p.m. - 5:00 p.m. Wrap-Up and Charge to Group
Joanne Elena, Ph.D., M.P.H.
Muin Khoury, M.D., Ph.D.
EGRP, DCCPS, NCI
5:00 p.m. Adjourn

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Meeting and Webcast Registration

The workshop is open to all interested individuals; however, the meeting space has a limited capacity. When the number of registrants reaches the meeting room capacity, registration for in-person attendance will close, and interested individuals will be placed on a waiting list and encouraged to register for the meeting's webcast.

For those who cannot attend in person, a live webcast of the workshop will be available. Webcast participants will be able to submit questions for the speakers via e-mail and participate in an online discussion forum during the meeting Breakout Sessions. Video of the Breakout Sessions will not be available on the webcast.

The Novel Approaches and Challenges to Data Harmonization Workshop, will be held on October 6 and 7, 2014. Learn more on the meeting web page.

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Planning Committee

  • Julie Buring, Sc.D., Harvard School of Public Health
  • Joanne Elena, Ph.D., NCI, DCCPS, EGRP
  • Elizabeth Gillanders, Ph.D., NCI, DCCPS, EGRP
  • James Lacey, Jr., Ph.D., City of Hope Cancer Center
  • Tram Kim Lam, Ph.D., NCI, DCCPS, EGRP
  • Sara Lindstrom, Ph.D., Harvard School of Public Health
  • Somdat Mahabir, Ph.D., NCI, DCCPS, EGRP
  • Julie Palmer, Sc.D., Boston University, Slone Epidemiology Center
  • Ulrike (Riki) Peters, Ph.D., Fred Hutchinson Cancer Research Center
  • Nicolas Wetzensen, M.D., Ph.D., NCI, DCEG
  • Deborah Winn, Ph.D., NCI, DCCPS, Office of the Director

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Contacts

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