Listening to Patients With Rare Diseases
Lancet 2009 March 14; 373(9667): 868
Showing items related by title, author, creator and subject.
Patients With Rare Diseases Work to Jump-Start Research; Advocacy Groups Create Their Own Tissue Banks to Aid in Drug Development Marcus, Amy Dockser (2006-07-11)
Thompson, Larry (1991-06-25)
Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB). Rubinstein, Yaffa R; Groft, Stephen C; Bartek, Ronald; Brown, Kyle; Christensen, Ronald A; Collier, Elaine; Farber, Amy; Farmer, Jennifer; Ferguson, John H; Forrest, Christopher B; Lockhart, Nicole C; McCurdy, Kate R; Moore, Helen; Pollen, Geraldine B; Ric (2010-09)A movement to create a global patient registry for as many as 7,000 rare diseases was launched at a workshop, "Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories, and Clinical ...