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 Registry form exists for all the BVMC disorders currently being studied:
- Cerebrotendinous Xanthomatosis
- Mevalonic Aciduria
- Hyperimmunoglobulinemia D with Periodic Fever Syndrome
- Niemann-Pick Disease Type C
- Sitosterolemia
- Sjögren-Larsson Syndrome
- Smith-Lemli-Opitz Syndrome
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: STAIR Contact Registry Form [.pdf]
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