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Poster image for Public Health Assessment of Genetic Tests for 2005 Biobank meetingInternational Biobank and Cohort Studies: Developing a Harmonious Approach

 
Meeting Summary

February 7-8, 2005 - Sheraton Buckhead - Atlanta, GA

> View Meeting Agenda

 

 

 

 

 

 

 

The Human Genome Epidemiology Network (HuGENet), in collaboration with the Public Population Project in Genomics (P3G) and the National Heart, Lung and Blood Institute, NIH, convened a multidisciplinary group of experts including geneticists, epidemiologists, laboratorians, biostatisticians, lawyers and medical publishers in Atlanta. Participants represented the members of the P3G project, (including Cartagene), HuGE Net, the UK biobank, the KORA-gen biobank from Germany, the GenomEUtwin biobank project from Sweden, the National Heart, Lung and Blood Institute, the National Children's Study, the Marshfield Personalized Medicine Project, and the Kaiser Permanente Northern California biobank project.

In addition to informing each of the participants regarding the progress made in each of the nascent Biobank projects underway around the world and spurring collegial interactions, the main goal for the meeting was to discuss the possibility of producing an overall statement aimed at harmonizing the format and improving the quality of publications arising from Biobank-based genetic-epidemiologic studies. The meeting also focused on beginning work towards producing a statement similar to that produced for randomized clinical trials (the CONSORT statement) and for observational studies (STROBE). Discussion on this process centered around creating a checklist and flowchart that would clearly describe the data flow within each Biobank study, allowing for the proper interpretation and future use in systematic reviews or meta-analyses. Important attributes of such a statement would include a thorough description of (a) study objectives and a-priori hypotheses; (b) participants; (c) genotyping processes; (d) exposure measurements; (e) outcome definitions and measurements; (f) statistical analysis plan including power and sample size descriptions; (g) assessment of confounding (including population substratification and other genotypic confounding); and (h) methods for subanalyses. This statement would serve as guidelines for publication, and could also be used to help guide investigators in planning studies at the time investigators first approach Biobanks with project ideas.

Considerable discussion followed and focused on the best avenue for providing and archiving the large amounts of data that will be produced from Biobank studies, and how to make this data available for future use. Also, consideration of and substantial support was given for a proposal that Biobanks produce a design and conduct template outlining basic structure, including intellectual property guidance, human subjects protection, and information technology standards. Such a template of core elements could be used as a reference document, to which each Biobank-based study could refer at the time of initiation and publication. The participants also agreed on the need of an online knowledge base that could include a repository of information on biobanks and their tools (e.g. questionnaires; data entry management; informed consent; confidentiality; governance documents …) on the P3G Web site.

The meeting participants agreed to develop the following products:

  1. A paper reporting on the biobank meeting and laying out the challenges and opportunities for human genome epidemiology studies in the context of biobanks. This paper would also contain extensions to STROBE statement that are specific to biobanks with examples and explanations from this field.
  2. Because of the overlap of biobank projects with general human genome epidemiology studies, a more general “module” on standards for presenting human genome epidemiologic data within the STROBE framework.
  3. A set of guidelines for documenting biobank structure, standards and procedures. It was also proposed that biobanks produce a separate statement outlining its structure, including intellectual property guidance, human subjects protection, and information technology standards. Such a report could be used as a reference document, to which each Biobank-based study could refer at the time of publication.
  4. The P3G led knowledge base group will take the lead in developing online repository of tools (e.g. informed consent documents), and register of biobank studies.

 

CENTERS FOR DISEASE CONTROL & PREVENTION INVITED PARTICIPANTS
Sara Bedrosian
Consultant
Office of Genomics and Disease Prevention CCHP, CDC


Linda Bradley, PhD
Geneticist
Office of Genomics and Disease Prevention CCHP, CDC

D. Joe Boone, PhD
Associate Director for Science
Division of Public Health Partnerships
National Center for Health Marketing, CDC

Bin Chen, PhD
Health Scientist
CCHIS, CDC

Adolfo Correa, MD, PhD
Supervisory Medical Officer
Division of Birth Defects and Developmental Disabilities
NCBDDD, CCHP, CDC

Robert L. (Bob) Davis, MD, MPH
Guest Scientist
Office of Genomics and Disease Prevention CCHP, CDC

W. Andrew Faucett , MS , CGC
ORISE Fellow
CCHIS, CDC

Marta Gwinn, MD, MPH
Associate Director for Science
Office of Genomics and Disease Prevention, CCHP, CDC

W. Harry Hannon, PhD
Chief, Newborn Screening Branch
Division of Laboratory Sciences
National Center for Environmental Health, CCEH, CDC

Susan Hariri, PhD, MPH
Epidemic Intelligence Service Officer
Office of Genomics and Disease Prevention CCHP, CDC

Muin Khoury, MD, PhD
Director
Office of Genomics and Disease Prevention
CCHP, CDC

Bruce Lin, MPH
HuGE Net Coordinator
Office of Genomics and Disease Prevention CCHP, CDC

Mary Lou Lindegren, MD
Medical Epidemiologist
Office of Genomics and Disease Prevention CCHP, CDC

Shauna Lyn, MD
Epidemic Intelligence Service Officer
Office of Genomics and Disease Prevention CCHP, CDC

Cynthia Moore, MD, PhD
Medical Geneticist
Office of Genomics and Disease Prevention CCHP, CDC

Nadeem Qureshi, MBBS
Harkness Fellow
Office of Genomics and Disease Prevention CCHP, CDC

Tom Savel, MD
Public Health Informatics Fellow
Office of the Director
NCBDDD, CDC

Leah Simpson, MBA
Public Health Advisor
Office of Genomics and Disease Prevention CCHP, CDC

Karen K. Steinberg, PhD
Acting Deputy Director
Coordinating Center for Health Promotion, CDC

Kathleen Szegda, MPH, MS
Project Coordinator
Office of Genomics and Disease Prevention CCHP, CDC

Marshalyn Yeargin-Allsopp, MD
Medical Epidemiologist
Division of Birth Defects and Developmental Disabilities
NCBDDD, CCHP, CDC

Virginia Barbour, MBBChir, DPhil
Senior Editor, PLoS Medicine
Public Library of Science
European Bioinformatics Institute
Genome Campus

Mylene Deschenes, BCL, LLB, LLM
Executive Director
Centre de recherche en droit public
Faculté de droit
Université de Montréal

Isabella Fortier, PhD, MS
Director of Genetic Epidemiology
McGill University and Genome Quebec Innovation Centre

Julian Higgins, PhD
MRC Biostatistics Unit
Institute of Public Health

Tom Hudson, PhD
Associate Professor and Associate Physician
Departments of Medicine and Human Genetics
McGill University and Genome Quebec Innovation Centre

John Ioannidis, MD
Department of Hygiene and Epidemiology
School of Medicine
University of Ioannina

Bartha Knoppers, PhD, LLD
Canada Research Chair in Law and Medicine
Centre de recherche en droit public
Universite de Montreal
C.P. 6128, succ. Centre-ville

Julian Little, PhD
Department of Epidemiology and Community Medicine
University of Ottawa

Jan-Eric Litton, PhD
Biomedical Computing Technology
Department of Medical Epidemiology and Biostatistics
Karolinska Institutet

Jack S. Mandel, PhD, MPH
Rollins Professor of Epidemiology
Chairman, Department of Epidemiology
Rollins School of Public Health
Emory University

Teri Manolio, MD, PhD
Director, Epidemiology and Biometry Program
National Heart, Lung, and Blood Institute
National Institutes of Health

Catherine McCarty, PhD
Senior Research Scientist and Director
Center for Human Genetics
Marshfield Clinic Research Foundation

David Moher, PhD
Director, Clinical Research
Children's Hospital of Eastern
Ontario Research Institute

Prof. John Newton, FRCP, FFPH
CEO
UK Biobank

Bill Ollier, PhD
CIGMR Director
Centre for Integrated Genomic Medical Research

Catherine Schaefer, PhD
Research Scientist / Epidemiologist
Kaiser Permanente Division of Research

Peter Scheidt, MD
Director, Program Office
National Children’s Study, Room 5C01C
National Institute of Child Health and Human Development
National Institutes of Health

H-Erich Wichmann, MD, PhD GSF
National Research Center for Environment and Health
Institute for Epidemiology

 

 

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