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New Models for Large Prospective Studies

January 22, 2010
Natcher Conference Center - Main Auditorium
Bethesda, Maryland

On January 22, 2010, the National Institutes of Health (NIH) hosted the New Models for Large Prospective Studies symposium at the Natcher Conference Center Main Auditorium in Bethesda, Maryland. 

Large prospective, population-based cohorts are the optimal design for defining disease burden and studying the many genetic, lifestyle, and environmental factors that underlie human disease. Leveraging or expanding existing efforts to establish a large-scale population cohort may serve to create a much needed national research resource with which to examine genetic and environmental contributions to disease and advance personalized medicine.

The symposium, organized by the NIH Office of the Director, featured the UK Biobank and other large-scale national and international efforts and involved a series of plenary sessions and discussion panels to highlight novel approaches, lessons learned, and emerging opportunities in key aspects of study design including recruitment, examination and assessment, biospecimens, health records, IT infrastructure, consent, ethics, access and funding.

Videocast

Agenda

Time Speaker/Topic

8:00 - 8:20 a.m.

Welcome, Background & Objectives
Francis Collins, NIH
Introduced by Teri Manolio, National Human Genome Research Institute

8:20 - 9:15 a.m

Recruitment
Chair: Teri Manolio, National Human Genome Research Institute
Novel approaches to recruitment of participants; sample representativeness & generalizability to other populations; & use of pilot studies to inform design, infrastructure, & planning & administration.

 

Presentation (15 minutes)
UK Biobank – Rory Collins, University of Oxford

 

 

Presentation (15 minutes)
American Cancer Society Cancer Prevention Study - III – Alpa Patel

 

 

Panel Discussion (25 minutes)

  • UK Biobank – Rory Collins, University of Oxford
  • American Cancer Society Cancer Prevention Study - III – Alpa Patel
  • National Children’s Study – Steven Hirschfeld, National Institute of Child Health & Human Develo p.m.ent
  • Prostate, Lung, Colorectal & Ovarian Cancer Screening Trial – Pam Marcus, National Cancer Institute
  • Veterans Affairs Genomic Medicine Program – J. Michael Gaziano, VA Boston Healthcare System; Brigham & Women's Hospital; Harvard Medical School

 

9:15 - 10:10 a.m.

Information Technology
Chair: Catherine Cowie, National Institute of Diabetes & Digestive & Kidney Diseases
Novel approaches to data collection, processing, & storage; electronic records & linkage; software & hardware; data standardization, access, reporting; data system administration & maintenance; & approaches to ensure privacy & confidentiality.

 

Presentation (15 minutes)
National Health & Nutrition Examination Survey – Cliff Johnson, Centers for Disease Control & Prevention

 

 

Presentation (15 minutes)
UK Biobank – Tim Peakman

 

 

Panel Discussion (25 minutes)

  • National Health & Nutrition Examination Survey – Cliff Johnson, Centers for Disease Control & Prevention
  • UK Biobank – Tim Peakman
  • Kaiser Permanente Research Program on Genes, Environment, & Health – Catherine Schaefer
  • Vanderbilt BioVU DNA Database – Daniel Masys, Vanderbilt University Medical Center
  • LifeGene – Nancy Pedersen, Karolinska Institutet

 

10:10 - 10:30 a.m.

Break

10:30 - 11:25 a.m.

Questionnaire & Examination
Chair: Robert Hoover, National Cancer Institute
Novel approaches to design & administration of questionnaires & conduct of physical & medical examinations; design & use of data collection centers; data standardization & validation; completeness of reporting; participant burden & assessment throughput; use of pilot studies to inform design; & personnel, planning & administration.

 

Presentation (15 minutes)
UK Biobank – Tim Sprosen

 

 

Presentation (15 minutes)
Center for Human Genetics – Catherine McCarty, Marshfield Clinic Research Foundation

 

 

Panel Discussion (25 minutes)

  • UK Biobank – Tim Sprosen
  • Center for Human Genetics – Catherine McCarty, Marshfield Clinic Research Foundation
  • National Children’s Study – Steven Hirschfeld, National Institute of Child Health & Human Develo p.m.ent
  • LifeGene – Nancy Pedersen, Karolinska Institutet
  • Veterans Affairs Genomic Medicine Program –  J. Michael Gaziano, VA Boston Healthcare System; Brigham & Women's Hospital; Harvard Medical School

 

11:25 a.m. - 12:15 p.m.

Lunch
On your own

12:15 - 1:10 p.m.

Consent
Chair: Kathy Hudson, NIH Office of the Director
Data privacy & confidentiality; ethics; governance; data sharing, data reporting & incidental findings; & publication policies.

 

Presentation (15 minutes)
National Children’s Study – Steven Hirschfeld, National Institute of Child Health & Human Develo p.m.ent

 

 

Presentation (15 minutes)
UK Biobank – Rory Collins, University of Oxford

 

 

Panel Discussion (25 minutes)

  • National Children’s Study – Steven Hirschfeld, National Institute of Child Health & Human Development
  • UK Biobank – Rory Collins, University of Oxford
  • Center for Human Genetics – Catherine McCarty, Marshfield Clinic Research Foundation
  • Prostate, Lung, Colorectal & Ovarian Cancer Screening Trial – Christine Berg, National Cancer Institute
  • Genetics & Public Policy Center – Joan Scott, Johns Hopkins University

 

1:10 - 2:05 p.m.

Biorepositories
Chair: Brenda Weis, Office of Strategic Coordination, NIH Office of the Director
Biospecimen collection, processing, transport, storage & archiving, tracking, & access; linkage with electronic health records & information; storage facilities & sample containers; pilot studies to inform design; & administration & maintenance.

 

Presentation (15 minutes)
UK Biobank – Tim Peakman

 

 

Presentation (15 minutes)
European Prospective Investigation into Cancer & Nutrition – Elio Riboli, Imperial College London
 

 

 

Panel Discussion (25 minutes)

  • UK Biobank – Tim Peakman
  • European Prospective Investigation into Cancer & Nutrition – Elio Riboli, Imperial College London
  • National Health & Nutrition Examination Survey – Cliff Johnson, Centers for Disease Control & Prevention
  • Ontario Health Study and the Canadian Partnership for Tomorrow – John McLaughlin, Cancer Care Ontario; Ontario Institute for Cancer Research
  • Kaiser Permanente Research Program on Genes, Environment, & Health – Catherine Schaefer

 

2:05 - 3:00 p.m.

Health Outcomes & Health Information
Chair: Barnett Kramer, Office of Disease Prevention, NIH Office of the Director
Selection of health outcomes of interest; access, acquisition, storage & validation of medical records; electronic records & data sources; linkage of medical, health & genetic information; personnel, administration & maintenance of record systems.

 

Presentation (15 minutes)
Kaiser Permanente Research Program on Genes, Environment, & Health – Catherine Schaefer

 

 

Presentation (15 minutes)
UK Biobank – Tim Sprosen

 

 

Panel Discussion (25 minutes)

  • Kaiser Permanente Research Program on Genes, Environment, & Health – Catherine Schaefer
  • UK Biobank – Tim Sprosen
  • American Cancer Society Cancer Prevention Study – III – Alpa Patel
  • Vanderbilt BioVU DNA Database – Daniel Masys, Vanderbilt University Medical Center
  • European Prospective Investigation into Cancer & Nutrition – Elio Riboli, Imperial College London

 

3:00 - 3:20 p.m.

Break

3:20 - 4:30 p.m.

Funding Agency Perspectives
Chair: Francis Collins, NIH
Challenges of funding & oversight of large prospective cohorts & biobanks.

 

Presentation (10 minutes)
Wellcome Trust – Sir Mark Walport

 

 

Presentation (10 minutes)
Medical Research Council – Wendy Ewart

 

 

Presentation (10 minutes)
International Agency for Research on Cancer – Elio Riboli, Imperial College London

 

 

Presentation (10 minutes)
The Canadian Partnership Against Cancer – John McLaughlin, Ontario Institute for Cancer Research

 

 

Panel Discussion (25 minutes)

  • Wellcome Trust – Sir Mark Walport
  • Medical Research Council – Wendy Ewart
  • International Agency for Research on Cancer – Elio Riboli, Imperial College London
  • The Canadian Partnership Against Cancer – John McLaughlin, Ontario Institute for Cancer Research

 

4:30 p.m.

Meeting Summary
Teri Manolio, National Human Genome Research Institute

4:40 p.m.

Conclusions for the NIH
Francis Collins, NIH
4:45 p.m.      Adjourn

Last updated: January 22, 2010