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Disease-Advocacy Groups Launch Genetic Biobank Alliance

NEW YORK, Nov. 10 (GenomeWeb News) - Several genetic disease-advocacy organizations have launched the Genetic Alliance Biobank, a repository for the standardized collection, storage, and distribution of biological samples and clinical data for research purposes.

 

Founding members of the alliance include the Inflammatory Breast Cancer Research Foundation, CFC International, Joubert Syndrome Foundation, National Psoriasis Foundation, NBIA Disorders Association, Noonan Syndrome Support group, and PXE International.

 

The founding members developed standardized model documents for the bank, which were designed and approved by an institutional review board.

 

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