8:00 - 8:20 a.m.
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Welcome, Background & Objectives
Francis Collins, NIH
Introduced by Teri Manolio, National Human Genome Research Institute
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8:20 - 9:15 a.m
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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.
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Presentation (15 minutes)
UK Biobank – Rory Collins, University of Oxford
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Presentation (15 minutes)
American Cancer Society Cancer Prevention Study - III – Alpa Patel
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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
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9:15 - 10:10 a.m.
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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.
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Presentation (15 minutes)
National Health & Nutrition Examination Survey – Cliff Johnson, Centers for Disease Control & Prevention
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Presentation (15 minutes)
UK Biobank – Tim Peakman
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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
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10:10 - 10:30 a.m.
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Break
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10:30 - 11:25 a.m.
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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.
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Presentation (15 minutes)
UK Biobank – Tim Sprosen
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Presentation (15 minutes)
Center for Human Genetics – Catherine McCarty, Marshfield Clinic Research Foundation
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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
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11:25 a.m. - 12:15 p.m.
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Lunch
On your own
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12:15 - 1:10 p.m.
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Consent
Chair: Kathy Hudson, NIH Office of the Director
Data privacy & confidentiality; ethics; governance; data sharing, data reporting & incidental findings; & publication policies.
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Presentation (15 minutes)
National Children’s Study – Steven Hirschfeld, National Institute of Child Health & Human Develo p.m.ent
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Presentation (15 minutes)
UK Biobank – Rory Collins, University of Oxford
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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
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1:10 - 2:05 p.m.
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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.
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Presentation (15 minutes)
UK Biobank – Tim Peakman
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Presentation (15 minutes)
European Prospective Investigation into Cancer & Nutrition – Elio Riboli, Imperial College London
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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
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2:05 - 3:00 p.m.
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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.
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Presentation (15 minutes)
Kaiser Permanente Research Program on Genes, Environment, & Health – Catherine Schaefer
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Presentation (15 minutes)
UK Biobank – Tim Sprosen
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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
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3:00 - 3:20 p.m.
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Break
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3:20 - 4:30 p.m.
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Funding Agency Perspectives
Chair: Francis Collins, NIH
Challenges of funding & oversight of large prospective cohorts & biobanks.
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Presentation (10 minutes)
Wellcome Trust – Sir Mark Walport
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Presentation (10 minutes)
Medical Research Council – Wendy Ewart
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Presentation (10 minutes)
International Agency for Research on Cancer – Elio Riboli, Imperial College London
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Presentation (10 minutes)
The Canadian Partnership Against Cancer – John McLaughlin, Ontario Institute for Cancer Research
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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
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4:30 p.m.
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Meeting Summary
Teri Manolio, National Human Genome Research Institute
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4:40 p.m.
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Conclusions for the NIH
Francis Collins, NIH
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4:45 p.m. |
Adjourn |