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
If you have been diagnosed with a VCP gene mutation and/or IBMPFD, please click "REGISTER HERE" and register yourself into our patient registry database. Collecting information on all of those 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 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/
Informational and How-to Videos on Patient Registry
About CoRDS Registry
Completing the Questionnaire
Article about our Patient Registry
Chiseko Ikenaga of Washington University at St. Louis recently studied our patient registry and concluded that "The Cure VCP Disease Patient Registry is useful for deepening the understanding of patient daily life." Her paper has been published in the Orphanet Journal of Rare Diseases. We deeply appreciate the work that she does in helping us develop appropriate clinical outcome measures. https://ojrd.biomedcentral.com/articles/10.1186/s13023-020-01551-0