Cure VCP Disease is committed to collaborating on research initiatives. Scientists interested in investigating p97 / VCP are encouraged to join our VCP Scientific Focus Group which meets monthly. Contact us at firstname.lastname@example.org.
Below are our partnerships and collaborations to power greater understanding of disease progression, capture the patient perspective, and collect clinical endpoints. These are patient-led research projects and we encourage all patients to get involved.
PATIENT POWERED RESEARCH OPPORTUNITIES
AllStripes Database of Medical Records
Cure VCP Disease and AllStripes are partnering to create a database that will enable multiple new VCP research projects. We're looking for patients willing to contribute their de-identified medical records to make this effort as strong as possible. More information >
Natural History Study
Cure VCP Disease and Nationwide Children's Hospital are partnering to learn how VCP disease changes people's strength and movements and affects their daily life. This info will help improve care and plan future research studies.
To sign-up contact Lindsay Alfano at NMDtrialinfo@nationwidechildrens.org
Refer your Doctor and Therapist
We need your help to identify all the doctors, practitioners and therapists who are currently treating VCP patients worldwide. You can help us build our VCP Medical Network by referring your doctor to us. This information will be used to create a Standard of Care, which will help in treating all VCP disease patients. This project is lead by Dr. Manish Korb and advised by our medical advisory board. Sign-up >
VCP Patient Registry
Our patient registry is hosted through CoRDS, a centralized international patient registry for all rare diseases. The patient registry survey only takes about 20 minutes to complete. The registry provides critical disease knowledge which makes disease easier to study, increasing the probability a treatment can be developed. More information >
UCI will be studying the effects of a respiratory resistance exercise training in improving lung function, in addition to muscle strength and function. You will be provided a training device and a gauge to measure respiratory pressures. You will be involved in a breathing exercise that you can do at home twice daily. No travel is required to participate in this study. The study duration is 40 weeks.
Hand Grip Remote Study
Cure VCP Disease is conducting an informal hand grip study to collect information on VCP Patients's hand grip strength over time. To participate, complete this form and we will mail you a dynamometer and give you instruction on how to use it. The goal is to measure your hand grip strength every two weeks over the course of 6 months to one year. Each measurement should only take 5 minutes. We are requesting a $20 deposit which will be reimbursed to you after you complete four entries. More information >
CURE VCP DISEASE MEDICAL CONFERENCE POSTERS
Becoming a brain donor & the process of brain donation for research could help advance the science into our disease, IBMPFD / VCP Disease. The legacy of donation offers future generations the possibility of improved health.
The University of Maryland Brain and Tissue Bank gratefully accepts brain and other tissue donations from individuals with neurologic, development, movement and psychiatric disorders as well as from individuals with none of these underlying diseases to serve as unaffected controls. Our researchers have worked with the NIH and the University of Maryland to establish a process so of ensuring that donations are properly collected and stored so that each donor's gift aids the advancement in VCP research.
Preregistration simplifies and speeds the process of tissue recovery when death occurs. If you choose to participate, be sure to denote "VCP Disease" in preregistration and collection.
Over 50 unique biosamples are available at the Corielle Institute for research purposes. LCL, Fibroblast, and DNA samples are currently available at Corelle for researchers interested in IBMPFD / VCP Disease.
These donations have been graciously donated in the past and may be requested directly from Corielle.
Individual universities also have patient biosamples stored at their individual laboratories. If the Corielle repository does not meet your current research needs, any researcher may contact Cure VCP Disease directly and our organization may be able to facilitate introductions between researchers.