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Cure VCP Disease Family Registry

Disease insights and a prospective natural history reported by patients and family members.

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Register Today

If you have been diagnosed with a VCP gene mutation or are related to someone affected, please complete our family registry.  Your valuable insights, combined with others with the disease, will accelerate the path to drug development and potential therapies.  This survey takes less than 40 minutes to complete.  All information is secure and follows the strictest security protocols.  You can choose to keep your information private, but we encourage you to share with us so that you may be included in research opportunities.

Publication about our Patient Registry

"The Cure VCP Disease Patient Registry is useful for deepening the understanding of patient daily life." 

Chiseko Ikenaga, Washington University at St. Louis

Published in the Orphanet Journal of Rare Diseases, this research has helped in the development of the standard of care, patient-centered research, and clinical trial design.  https://ojrd.biomedcentral.com/articles/10.1186/s13023-020-01551-0

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