Agenda: Public Confidence and Involvement in Clinical Research
INTRODUCTION AND WELCOME
Mary Woolley
President
Research! America
PANEL 1: DATA-BASED STUDIES
Mary Woolley presented findings from polls of the general public by Research!America on attitudes toward medical research.
Kenneth Getz, President and Publisher of CenterWatch, presented data from post-trial surveys of patients in industry-sponsored clinical trials.
Robert Comis, President of the Coalition of National Cancer Cooperative Groups, presented Harris poll data on the views of the general public, patients, health care providers, and others.
PANEL 2: PATIENT PERSPECTIVES ON CLINICAL RESEARCH
Martha Hill, Director, Center for Nursing Research at Johns Hopkins University, described obstacles to recruiting and retaining young, male, inner-city African-Americans for a study of hypertension care programs.
Sherry Marts, Scientific Director of the Society for Women's Health Research talked about the society's "Clinical Trials Campaign" and early findings from Internet and phone surveys on its effectiveness.
Margene Kennedy, Manager of the Clinical Trials Unit at Johns Hopkins, talked about her experiences with patients volunteering for a variety of studies.
David Barr, Director of the Forum for Collaborative HIV Research at George Washington University, discussed the Forum's work bringing together scientists, activists, and patients to facilitate clinical research.
PANEL 3: PERSPECTIVES FROM OTHER PARTS OF THE COMMUNITY
Judith Tsipis, Professor of Biology and Director of Genetic Counseling at Brandeis University, will talk about an ongoing controversy over gene patenting and Canavan disease.
Rex Cowdry, Medical Director of the National Alliance for the Mentally Ill, will talk about attitudes of psychiatric patients and their families toward clinical research.
Richard Schwartz, Community physician will discuss the role the clinical researcher outside of the research institution setting
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