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The first Conference on Clinical Research for Rare Diseases was held on September 5, 2007 at the Bethesda North Marriott in Rockville, MD
Submitted Abstracts
Submitted Abstracts .doc (334kb)
Program
The full day program included a series of short lectures with ample time for questions and discussion, plus panel discussions by expert researchers in rare diseases.
Topics:
- Study design and biostatistics for dealing with
small sample sizes- Recruitment strategies for rare diseases
- Availability of core translational research
resources- Maintaining anonymity for participants with rare
diseases- Use of demographic and registry data
- Pathways for developing orphan products (FDA)
- Working with patient advocacy groups
- Working with industry on rare disease research
- Career development in rare diseases research
Featured Speaker: Keynote address given by Dr. Francis Collins, Director, Human Genome Research Institute
Speakers included expert Clinical Investigators who represent a spectrum of medical diseases and disciplines and are actively engaged in rare disease research, as well as members of the NIH and Industry.
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Attendees
Target audience includes new investigators, trainees, junior faculty, and others interested in rare disease research methodology.
Attendees have the opportunity to:
- Meet key leaders in rare diseases research.
- Engage in formal and informal networking and idea generation with other trainees and investigators.
- Discuss career development and strategic planning for academic success.
- Explore research collaborations.
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Abstract and Poster Session
Conference attendees are encouraged to submit an abstract for review by the planning committee. Abstracts selected by the planning committee are invited to be displayed as a poster during the conference.
Investigators working on rare diseases provide feedback and advice during the poster session.
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Conference Tools:
Program Flyer .pdf (17MB - For Print)
Program Flyer .pdf -(182kb Web Resolution)
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