About The Contact Registry
The Contact Registry is a method by which patients (and their families) can register themselves to be contacted in the future about clinical research opportunities. An online Contact Registry form exists for all the BVMC disorders currently being studied:
- Familial Cavernous Malformations (CCM) - Common Hispanic Mutation
- Sturge-Weber syndrome (SWS) - Leptomeningeal Angiomatosis
- Hereditary Hemorrhagic Telangectasia (HHT) - Brain Arteriovenous Malformation (BAVM
Download the Contact Registry Paper Form
The Rare Diseases Network has created a paper version of the Contact Registry form. This form can be downloaded by Physicians and Advocacy Groups in order to provide the form to those who need assistance outside the internet.
- Download: BVMC Contact Registry Form [.pdf]
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