Informed consent process for patient participation in rare disease registries linked to biorepositories

Contemp Clin Trials. 2012 Jan;33(1):5-11. doi: 10.1016/j.cct.2011.10.004. Epub 2011 Oct 24.

Authors

Yaffa R Rubinstein¹, Stephen C Groft, Sara Hull Chandros, Julie Kaneshiro, Barbara Karp, Nicole C Lockhart, Patricia A Marshall, Richard T Moxley 3rd, Geraldine B Pollen, Vanessa Rangel Miller, Jack Schwartz

Affiliation

¹ Office of Rare Diseases Research, National Institutes of Health, Bethesda, MD 20892, United States. rubinsty@mail.nih.gov

No abstract available

Publication types

Review

MeSH terms

Biological Specimen Banks / ethics*
Humans
Informed Consent / ethics*
Patient Participation / statistics & numerical data*
Rare Diseases*
Registries*
Tissue Donors / ethics*

Grants and funding

P50 HG003390/HG/NHGRI NIH HHS/United States