Dr. Matt Might, Chief Scientific Officer of NGLY1.org, presented at the June 28, 2017, NIH-NCATS meeting on data registries in rare disease.  His presentation was entitled “NGLY1: Data as a Drug.”

Dr. Might is a member of an NIH-NCATS committee which was created to implement data standardization and registry development to encourage research to be shared/accessed and empower patient groups to utilize registries and natural history studies more effectively.

The purpose of this meeting was to accelerate adoption and increase the utility and interoperability of these registries for advancing understanding and treatment (especially regulatory approval) for rare diseases.

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  • Emile najm says:

    Hi,
    i saw on your website that “Dr. Might is a member of an NIH-NCATS committee which was created to implement data standardization and registry development to encourage research to be shared/accessed and empower patient groups to utilize registries and natural history studies more effectively”.
    Could you please provide with a link to create a registry. My son is one of 90 kids with a rare genetic disease. As a group we re looking to build a registry. Thank you. Emile. 845 282 4979. Emilenajem@yahoo.com