Will the Cavernous Malformation Registry share my data with pharmaceutical companies?

Researchers from pharmaceutical companies and other commercial entities are invited to request de-identified, anonymous data from the Cavernous Malformation Registry. We hope our data helps research and clinical trial progress more quickly and efficiently.  Interested parties are required to submit a written research proposal to the Alliance to Cure Cavernous Malformation. Before providing data to researchers, a Research Committee reviews the proposal to determine whether sharing data is in the best interest of the affected community.