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Major Healthcare Organizations Align to Share Genomic and Clinical Data

June 6, 2013
by Gabriel Perna
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Seventy major healthcare organizations, including hospitals, associations, and research groups, have announced the formation of an alliance dedicated to sharing and integrating genomic and clinic data. The global, non-profit alliance features notable institutions such as Harvard University, Beth Israel Deaconess Medical Center, Johns Hopkins University School of Medicine, and Brigham & Women’s Hospital.

An article on the Eli and Edythe L. Broad Institute of Harvard and MIT website states that the organizations participating have signed a letter of intent to work together to create a not-for-profit, inclusive, public-private, international, non-governmental organization that will develop a framework of international standards that can oversee how genomic and clinical data are shared. The vision of the 70 organizations is that both clinical and genomic data will be stored in platforms built on interoperable standards.

The creation of this group came from a January meeting where 50 colleagues from eight countries met to discuss the current challenges and opportunities in genomic research and medicine. They decided this kind of framework was needed for the sake of medical progress.

A list of the participating organizations can be found here.

Linking and sharing clinical and genomic data has become increasingly popular in medicine. Recently, Mount Sinai Medical Center announced that 25,000 people have signed on to participate in its biobank program, BioMe, where each patient has broadly consented to DNA sequencing, contact from researchers, and longitudinal studies related to data embedded in the electronic medical record (EMR). 

Other initiatives have been announced at Oregon Health & Science University (OHSU) as well as Weill Cornell Medical College and NewYork-Presbyterian Hospital

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