The Genetic and Rare Diseases Information Center (GARD): Eleven years of improving access to hard-to-find genetic and/or rare diseases information and resources.

Thursday, November 07, 2013 — Poster Session II
12:00 p.m. – 2:00 p.m.	FAES Academic Center (Upper-Level Terrace)	NCATS	RSCHSUPP-23

Authors

J. Lewis
M. Snyder
H Hyatt-Knorr

Abstract

The National Institutes of Health’s Genetic and Rare Diseases Information Center (GARD) provides access to often hard-to-find information about genetic and/or rare diseases in English or Spanish. Over the last 11 years, GARD has answered more than 38,000 questions. The public can call or write to request information about rare diseases - diseases that affect fewer than 200,000 people in the United States - or about conditions that may be genetic but not rare. Questions are answered by GARD’s experienced Information Specialists who include genetic counselors and a medical geneticist. Patients and their family members or friends make up two-thirds of the people who contact GARD. Another 11% are health care providers or researchers. Researchers often request help finding: disease organizations to help recruit participants; statistical sources; informed consent, IRB approval, funding resources; and NIH programs that support rare disease research. GARD provides each user with a customized response. GARD provides access to its extensive database online (http://rarediseases.info.nih.gov/GARD/). Disease-specific web pages provide resources for more than 6,300 diseases; extensive information for more than 1,100 diseases. A qualitative analysis of the reasons people contact GARD is underway to provide insight into information gaps; and to anticipate future information needs.