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You are viewing all events beginning from 07/01/2009.
Advancing Rare Diseases Research through Networks and Collaboration
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Thursday, July 16, 2009
7:30 AM - 4:30 PM
NIH Main Campus, Building 45, Natcher Conference Center, Main Auditorium
Conference
This conference is co-sponsored by the National Center for Research Resources (NCRR) and the NIH Office of Rare Diseases Research (ORDR). this conference will provide a forum to:
- Discuss lessons learned from the Rare Diseases Clinical Research Network.
- Highlight successful collaborations to improve rare diseases research.
- Highlight the involvement and essential role of patient advocacy groups to facilitate research and accrual of patients.
- Discuss the role of best practices across research consortia and research networks for translation of basic discoveries into clinical practice in rare diseases.
Speakers from NHGRI Include:
- Francis S. Collins, M.D., Ph.D.
Topic of Presentation: Keynote
Time of Presentation: 8:15 a.m to 9:00 a.m.
- Christopher Austin, M.D.
Topic of Presentation: Basic Research to Clinical Research Translation (Panel)
Time of Presentation: 2:45 p.m. to 3:30 p.m.
- Alan E. Guttmacher, M.D.
Topic of Presentation: Wrap-up
Time of Presentation: 4:15 p.m. to
4:30 p.m.
View the Agenda [ncrr.nih.gov]
Conference Registration [rarediseases.info.nih.gov]
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With Reservations: Native Americans' Complex Relationship with Medical/Genetics Research
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Thursday, July 16, 2009
11:00 AM - 12:00 PM
NIH Main Campus, Building 50, Room 1227
Lecture
Puneet Sahota, Ph.D.
Department of Anthropology
Washington University in St. Louis
This presentation describes the multi-faceted relationship between a Native American community and biomedical research, including research on the genetic basis of disease (hereafter termed medical/genetics research). Participant-observation and in-depth interviews were conducted in a Native American community located in the Southwestern U.S. from June 2006 to December 2007. Interviews were conducted with: 53 tribal members, including members of the Tribal Council; tribal health care staff; tribal attorneys; and interlocutors in national conversations about medical/genetics research and Native Americans. Tribal member interviewees were purposively selected to include approximately equal numbers of individuals who (1) had and had not participated in past medical/genetics research studies and (2) did and did not have diabetes. Interviews revealed that tribal members had varied perspectives on medical/genetics research. Tribal members reacted in divergent ways to previous research studies reporting that Native Americans had genetic risk factors for diabetes. Some interviewees felt fatalistic about developing diabetes as a result, while others were motivated to try to prevent the disease. Many community members who had participated in past medical/genetics research studies viewed these studies as an important source of health care, particularly for diabetes prevention and management. They often felt that research studies provided better medical care than their regular health care providers, and inadequate funding for the Indian Health Service may have contributed to this perception. Community members also held diverse views on biological specimen handling in research. Compared to interviewees who did not identify with Native American "traditions," community members who identified as traditional people more commonly wanted their specimens returned to them or disposed of in a ceremonial manner. During the fieldwork period, the tribal community formalized its unique partnership with a genetics research institute through a contract stipulating shared intellectual property rights for the tribe and the institute. Tribal Council members, tribal attorneys, and tribal health care staff carefully crafted contract language ensuring tribal control over the handling of biological specimens and data. Through taking control of biological specimens/data and research more broadly, tribal members are tightening the boundaries around their community and seeking to maintain its physical and cultural integrity.
For questions, please contact Sarah Harding at sharding@mail.nih.gov.
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NIH State-of-the-Science Conference: Family History and Improving Health
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August 24–26, 2009
NIH Main Campus, Building 45, Natcher Auditorium
Conference
Dates and Times:
Monday, August 24, 2009 8:30 a.m. - 5:00 p.m.
Tuesday, August 25, 2009 8:30 a.m. - 12:00 p.m.
Wednesday, August 26, 2009 9:00 a.m. - 11:00 a.m.
Be part of pivotal discussions on the effectiveness of family history information for disease prediction and improvement of patient health outcomes. After weighing the evidence from a systematic literature review, expert presentations, and audience input, an impartial, independent panel will present a statement of its collective assessment of the evidence to address six predetermined conference questions:
- What are the key elements of a family history in a primary care setting for the purposes of risk assessment for common diseases?
- What is the accuracy of the family history, and under what conditions does the accuracy vary?
- What is the direct evidence that getting a family history will improve health outcomes for the patient and/or family?
- What is the direct evidence that getting a family history will result in adverse outcomes for the patient and/or family?
- What are the factors that encourage or discourage obtaining and using a family history?
- What are future research directions for assessing the value of family history for common diseases in the primary care setting?
Speakers from NHGRI giving presentations:
All speakers from NHGRI will present on August 24, 2009.
Alan Guttmacher, M.D., Acting Director, NHGRI
Time: 8:30 a.m.
Topic: Introduction
W. Gregory Feero, M.D., Ph.D., Senior Advisor to the Director for Genomic Medicine
, NHGRI
Time: 8:35 a.m.
Topic: Opening Remarks
Colleen McBride, Ph.D., Chief, Social and Behavioral Branch, NHGRI
Time: 4:00 p.m.
Topic: Research Challenges in Affecting Behavioral Change With Family History Information
For more information, visit: http://consensus.nih.gov/2009/familyhistory.htm
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NCHPEG 12th Annual Meeting
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September 23–24, 2009
8:00 AM - 12:00 PM
Bethesda North Marriott Hotel & Conference Center
5701 Marinelli Road
Bethesda, MD 20852
Meeting
The 12th Annual NCHPEG Meeting entitled Genetics Education for Health Professionals: What Are the key messages? How do we deliver them? will be held Wednesday, September 23 - Thursday, September 24, 2009. The meeting will include plenary sessions on genetics and common disease, model educational programs, and Web-based instruction on genetics, in addition to a poster session and reception, meetings of working groups and committees, and exhibits by commercial and non-profit organizations.
NHGRI Speakers include Acting Director Alan Guttmacher, M.D., Office of Population Genomics Director Terry Manolio, M.D., Ph.D., and NHGRI Communications Chief Larry Thompson, M.S., M.F.A..
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