Genetic Advocacy Organizations Team-up on Biobank

A group of genetic advocacy organizations have teamed-up to launch a biobank.  From their webpage:

Seven genetic advocacy organizations established the Genetic Alliance
BioBank™, a repository for the standardized collection, storage and
distribution of biological samples and clinical data for research
purposes. This novel, advocacy-owned and -managed repository focuses
and accelerates research, providing infrastructure for many advocacy
groups to build a valuable resource. The Genetic Alliance BioBank™ sets
new standards for participant involvement in research, provides
standardized protocols, allows for ethical re-contact and robust
protections in the context of the communities served by these advocacy
organizations….Researchers who wish to receive samples submit an application to the
disease-specific advocacy organization. These organizations release
coded samples to the researcher and hold the key that connects specific
samples to individuals, offering a unique opportunity to enable
follow-up studies while protecting participant confidentiality. The
Genetic Alliance BioBank™ will help accelerate basic and translational
research and serve as an essential platform solution for applying the
tools of genetics, genomics, proteomics and metabolomics. The GA
BioBank™ will also provide an opportunity for cross-disease research
that may shed light on pathways and etiology for both common and rare

Genetic Advocacy Organizations that cofounded the Genetic Alliance Biobank:
CFC International
Inflammatory Breast Cancer Research Foundation
Joubert Syndrome Foundation
National Psoriasis Foundation
NBIA Disorders Association
Noonan Syndrome Support Group
PXE International


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