Patient Registry

Only by capturing all of the data on those with the disease will we make progress on research and possible treatments! 

If you have been diagnosed with a VCP gene mutation and/or IBMPFD, please click the link below and register yourself into our patient registry database.  It is imperative that we collect information on all of those with the disease.  It takes less than 20 minutes to complete.  All information is secure and follows the strictest security protocols.  You can choose to keep your information private from researchers, but we encourage you to enable researchers to see that information.

Our patient registry is hosted through CoRDS, a centralized international patient registry for all rare diseases. The goal of the CoRDS registry is to connect as many patients and researchers as possible to help advance treatments and cures for rare diseases. The CoRDS registry is free for patients to enroll and for researchers to access. CoRDS is part of Sanford Research, a not-for-profit research institution, based in Sioux Falls, SD.  For more information about CoRDS, please go to http://www.sanfordresearch.org/specialprograms/cords/aboutcords/

 

Creating a registry of patients is the single most valuable action a rare disease community can take. The registry provides critical disease knowledge which makes that disease easier to study, increasing the probability a treatment can be developed.

David Meeker, CEO, Genzyme

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EIN NO.: 82-4368871