Informed consent process for patient participation in rare disease registries linked to biorepositories.
Office of Rare Diseases Research, National Institutes of Health, Bethesda, MD 20892, United States. rubinsty@mail.nih.gov
Yaffa R
YR
Rubinstein
Stephen C
SC
Groft
Sara Hull
SH
Chandros
Julie
J
Kaneshiro
Barbara
B
Karp
Nicole C
NC
Lockhart
Patricia A
PA
Marshall
Richard T
RT
Moxley
Geraldine B
GB
Pollen
Vanessa Rangel
VR
Miller
Jack
J
Schwartz
D018070:Biological Specimen Banks / Q000941:ethics*; D006801:Humans; D007258:Informed Consent / Q000941:ethics*; D010358:Patient Participation / Q000706:statistics & numerical data*; D035583:Rare Diseases; D012042:Registries; D014019:Tissue Donors / Q000941:ethics*