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

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

Yaffa R Rubinstein  1 , 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
Affiliations
Review

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

Yaffa R Rubinstein et al. Contemp Clin Trials. 2012 Jan.
No abstract available

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References

    1. Creating a Global Rare Disease (Patient)t Registry Linked to a Rare Diseases Biorepository Database: Rare Disease-HUB (RD-HUB),”/Rubinstein et al. Contemporary Clinical Trials. 2010 Sep;31(5):394–404. - PMC - PubMed
    1. Forrest CB, Bartek RJ, Rubinstein Y, Groft SC. The case for a global rare diseases registry. Lancet. 2010 Aug 2;193:5–7. - PubMed
    1. De-Identified data refer to coded data or information where all 18 elements that could be used to identify the individual have been removed but the link to the individual has been preserved. http://privacyruleandresearch.nih.gov/pr_08.asp.

    1. Biospecimens is a collective term for tissues, body fluid or any sample taken from the body.

    1. Full presentation of the speakers will be posted on the GRDR website