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Family History and Improving Health conference artwork


NIH State-of-the-Science Conference:
Family History and
Improving Health

August 24-26, 2009
Bethesda, Maryland

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Sponsors

 

National Human Genome Research Institute    Consensus Development Program logo
National Human Genome Research Institute
Office of Medical Applications of Research

Co-Sponsors

Eunice Kennedy Shriver National Institute of Child Health and Human Development logo            National Cancer Institute logo               National Heart Lung and Blood Institute logo             National Institute of Alcohol Abuse and Alcoholism logo   National Institute on Drug Abuse logo     National Institute of Mental Health      National Institute of Nursing Research logo      National Library of Medicine logo        Office of Rare Diseases Research logo      Office of Research on Women's Health
Eunice Kennedy Shriver National Institute of Child Health and Human Development
National Cancer Institute
National Heart, Lung, and Blood Institute
National Institute of Alcohol Abuse and Alcoholism
National Institute on Drug Abuse
National Institute of Mental Health
National Institute of Nursing Research
National Library of Medicine
Office of Rare Diseases Research
Office of Research on Women's Health

Partners

Centers for Disease Control and Prevention logo    Health Resources and Services Administration logo   Office of the Surgeon General logo    Agency for Healthcare Research and Quality logo
Centers for Disease Control and Prevention
Health Resources and Services Administration
Office of the Surgeon General

The Agency for Healthcare Research and Quality provided additional conference development support.

Special Thanks

NIH Library logo
NIH Library

Agenda

 

Monday, August 24, 2009

8:30 a.m. 

Introduction
Alan Edward Guttmacher, M.D.
Acting Director
National Human Genome Research Institute
National Institutes of Health

8:35 a.m. 

Opening Remarks
W. Gregory Feero, M.D., Ph.D.
Senior Advisor for Genomic Medicine
National Human Genome Research Institute
National Institutes of Health

8:40 a.m.  Charge to the Panel
Jennifer Miller Croswell, M.D.
Acting Director
Office of Medical Applications of Research
Office of the Director
National Institutes of Health
8:50 a.m.  Conference Overview and Panel Activities
Alfred O. Berg, M.D., M.P.H.
Panel and Conference Chairperson
Professor and Chair
Department of Family Medicine
University of Washington
9:00 a.m.  Family History, Personalized Medicine, Primary Care and Improved Health
Muin Khoury, M.D., Ph.D.
Director
National Office of Public Health Genomics
Centers for Disease Control and Prevention
  1. What Are the Key Elements of a Family History in a Primary Care Setting for the Purposes of Risk Assessment for Common Diseases?
9:20 a.m.  Evidence-Based Practice Center Presentation I: A Summary of the Evidence of Family History as a Determinant of Risk for Common Disorders Affecting Pediatric and Adult Populations
Brenda Wilson, M.B.Ch.B, M.Sc., M.R.C.P. (UK), F.F.P.H.
Associate Professor
Department of Epidemiology and Community Medicine
University of Ottawa
9:40 a.m.  Discussion
10:00 a.m.  Family History as a Determinant of Risk for Chronic Disorders: Common Conditions and Beyond: I
Maren T. Scheuner, M.D., M.P.H., FACMG
Natural Scientist
RAND Corporation
10:20 a.m.  Family History as a Determinant of Risk for Chronic Disorders: Common Conditions and Beyond: II
Paula Yoon, Sc.D., M.P.H.
Division for Heart Disease and Stroke Prevention
Centers for Disease Control and Prevention
10:40 a.m. 

Research Challenges in Assessing Risk With Family History
Louise S. Acheson, M.D., M.S.
Professor
Department of Family Medicine
Case Western Reserve University

11:00 a.m. 

Discussion

  1. What Is the Accuracy of the Family History, and Under What Conditions Does the Accuracy Vary?
11:30 a.m.

Evidence-Based Practice Center Presentation II: A Summary of the Evidence for the Accuracy of Self-Reporting Family History Across Different Diseases
P. Lina Santaguida, Ph.D.
Assistant Professor
Department of Clinical Epidemiology and Biostatistics
Associate Director
McMaster University Evidence-based Practice Center

11:50 a.m.  Accuracy of Family History Information for Risk Assessment in Clinical Care
Harvey J. Murff, M.D., M.P.H.
Assistant Professor in Medicine
Institute for Medicine and Public Health
Vanderbilt University
12:10 p.m. 

Discussion

12:30 p.m.  Lunch
  1. What Is the Direct Evidence That Getting a Family History Will Improve Health Outcomes for the Patient and/or Family?
1:30 p.m.  Evidence-Based Practice Center Presentation III: Does the Use of Family History as a Screening Tool in Primary Care Settings Improve Health Outcomes? A Synthesis of the Evidence
Nadeem Qureshi, M.S., D.M., M.Sc.
Clinical Associate Professor in Primary Care
Division of Primary Care
School of Graduate Entry Medicine and Health
University of Nottingham
Derby City General Hospital
1:50 p.m. 

Perspectives on the Utility of Family History as a Screening Tool: The CDC Family Healthcare Experience
Wendy S. Rubinstein, M.D., Ph.D., FACMG
Medical Director
Center for Medical Genetics
Evanston Northwestern Healthcare

2:10 p.m.  Perspectives on the Utility of Family History as a Screening Tool: The Utah State Experience
Ted Adams, Ph.D., M.P.H.
Cardiovascular Genetics Research Program
University of Utah
2:30 p.m. 

Discussion

3:00 p.m.  Perspectives on the Utility of Family History as a Screening Tool in Pediatric Populations
Ridgely Fisk Green, Ph.D., M.S.C.
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention
3:20 p.m.  Research Challenges in Demonstrating the Utility of Family History in Obstetrical and Pediatric Settings
Siobhan Dolan, M.D., M.P.H.
Associate Professor, Obstetrics and Gynecology
Albert Einstein College of Medicine
Montefiore Medical Center
3:40 p.m.  Family History and Those Providing Care for Patients With Genetic Disorders: The Customer’s Perspective
Sharon Terry, M.A.
President and CEO
Genetic Alliance
4:00 p.m.  Research Challenges in Affecting Behavioral Change With Family History Information: Patients and Providers
Colleen McBride, Ph.D.
Chief, Social and Behavioral Research Branch
National Human Genome Research Institute
National Institutes of Health
4:20 p.m.  Discussion
5:00 p.m.  Adjournment


Tuesday, August 25, 2009

  1. What Is the Direct Evidence That Getting a Family History Will Result in Adverse Outcomes for the Patient and/or Family?
8:30 a.m. 

The Potential Costs of Screening for Risk With Family History
James Haddow, M.D.
Professor (Research)
Pathology and Laboratory Medicine
Womens and Infants Hospital of Rhode Island

8:50 a.m. 

Perspectives on the Clinical Applications of Family History as a Screening Tool Across Multiple Populations
Chanita Hughes-Halbert, Ph.D.
Assistant Professor of Psychiatry
Director, Community and Minority Cancer Control Program
University of Pennsylvania

9:10 a.m.  Research Challenges in Assessing the Economic Costs of Using Family History as a Screening Tool in Primary Care
Scott D. Ramsey, M.D., Ph.D.
Associate Professor of Medicine and Health Services
Associate Member, Cancer Prevention Research Program
Division of General Internal Medicine
Fred Hutchinson Cancer Research Center
9:30 a.m.  Discussion
  1. What Are the Factors That Encourage or Discourage Obtaining and Using a Family History?
10:00 a.m.  A Summary of the Use of Family History in Primary Care From Across the
Pond(s)
Jon Emery, D.Phil., FRACGP
Department of General Practice
University of Western Australia
10:20 a.m.  Family History and Healthcare: The Experience of the National Council of La Raza
Liany E. Arroyo, M.P.H.
Director, Institute for Hispanic Health
National Council of La Raza
10:40 a.m.  Health IT – Based Strategies For Studying The Use Of Family History In Primary Care
Kevin S. Hughes, M.D., F.A.C.S.
Surgical Director, Breast Screening
Co-Director, Avon Comprehensive Breast Evaluation Center
Massachusetts General Hospital
11:00 a.m.  Reconsidering the Use of Family History in Primary Care Revisited
Eugene C. Rich, M.D., F.A.C.P.
Director
Center for Practice Improvement and Outcomes Research
Department of Medicine
School of Medicine
Creighton University
11:20 a.m.  Discussion
12:00 p.m.  Adjournment


Wednesday, August 26, 2009

9:00 a.m. Presentation of the Draft State-of-the-Science Statement
9:30 a.m. Public Discussion
11:00 a.m. Adjournment
Panel Meets in Executive Session
2:00 p.m. Press Telebriefing

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