Rare Disease Clinical Research Consortia: Immediate and Rich Sources of Translational Research Data, Partnering Opportunities
Track
:
Track 18: Rare/Neglected Diseases
Program Code:
396
Date:
Wednesday, June 27, 2012
Time:
3:30 PM to 5:00 PM
EST
CHAIR
:
Cindy Hahn, Alagille Syndrome Alliance, United States
Cindy Luxhoj Hahn, MUP, AICP, is President & CEO of the Alagille Syndrome Alliance, a non-profit patient support and advocacy group she founded in 1993. Today she continues to guide the Alliance, serving hundreds of families worldwide through education, advocacy, and research.
As Dir. of Extramural Research Prog., Ofc of Rare Diseases Research, NIH, she oversees the Rare Diseases Clin Research Network & is responsible for developing the program to coordinate research activities across NIH in collaboration with patient advocates & other federal agencies & organizations.
Cindy Hahn, Alagille Syndrome Alliance, United States
Cindy Luxhoj Hahn, MUP, AICP, is President & CEO of the Alagille Syndrome Alliance, a non-profit patient support and advocacy group she founded in 1993. Today she continues to guide the Alliance, serving hundreds of families worldwide through education, advocacy, and research.
Ronald Sokol, Children's Hospital Colorado, United States
Dr. Sokol is Professor and Vice Chair, Department of Pediatrics, and Section Chief of Pediatric Gastroenterology, Hepatology and Nutrition, and Director of the Colorado Clinical and Translational Sciences Institute at the University of Colorado School of Medicine and Children’s Hospital Colorado.
Description
Rare disease clinical research consortia offer a rich data source for translational research. Investigating diseases from porphyria to pediatric cholestasis, they present an array of collaborative opportunities for the pharmaceutical industry.
Learning Objectives: Describe the basic framework of the RDCRN and the ChiLDREN Network Recognize the rich and immediate data source offered by the RDCRN and the ChiLDREN Network Recognize the innovative partnering opportunities presented by these Rare Disease Clinical Research Consortia.