The Myrovlytis Trust Leverages Pulse Infoframe's Platform to Study Birt-Hogg-Dubé Syndrome
Retrieved on:
Thursday, February 17, 2022
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To advance their mission the Trust is joining a growing number of rare disease advocacy organizations, leveraging Pulse Infoframe's registry platform.
Key Points:
- To advance their mission the Trust is joining a growing number of rare disease advocacy organizations, leveraging Pulse Infoframe's registry platform.
- "We are delighted to be initiating the BHD International Registry (BIRT) in partnership with Pulse Infoframe," says Dr. Anna Webb, director of The Myrovlytis Trust and BHD Foundation.
- Pulse Infoframe's platform follows a stringent security and governance framework to house data from multiple rare disease communities.
- The overall goal of The Myrovlytis Trust is to provide support, drive research and improve outcomes for patients and their families.