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Cure VCP Disease Patient Registry

Disease insights and a prospective natural history reported by patients


Register Today

If you have been diagnosed with a VCP gene mutation, please complete our patient registry questionnaire.  Your valuable insights, combined with others with the disease, will accelerate the path to drug development and potential therapies.  This survey 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, but we encourage you to share with us so that you may be included in research opportunities.

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About CoRDS

Our patient registry is hosted through CoRDS, a centralized international patient registry for all rare diseases. CoRDS is part of Sanford Research, a not-for-profit research institution, based in Sioux Falls, SD. 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.


For more information about CoRDS or to request access, please go to

CoRDS Rare Disease Registry

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

graphic describing the percentage of patients in each movement category for various daily activities

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.

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