About The Contact Registry
The Patient 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 NAMDC diseases currently being studied:
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: NAMDC Contact Registry Form [.pdf]
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Department of Health and Human Services
