Collaboration can advance rare-disease work, researcher says

Researchers working on rare diseases should get access to EMRs, clinical trial data, patient registries, tissue samples, biofluid repositories and other information that is being collected but not shared, says amyotrophic lateral sclerosis researcher Alex Sherman. A consortium of ALS research organizations has collected data from more than 8,000 trials, and Sherman said this kind of collaborative approach can bring together enough data to allow advances in rare-disease research.

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The Merits of Data Sharing in Tackling Rare Diseases - Bio-IT World - Bio-IT World

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