MyVHL: Patient Natural History Study
Note: This is a VHL Alliance initiative. The CVHLA encourages all who would like to participate in this study.
MyVHL (formally known as Cancer is in Our Genes International Patient Database – CGIP) is a partnership between VHLA and VHLA’s Research Council and is part of the National Organization for Rare Diseases (NORD) IAMRARE registry platform.
MyVHL complements existing researcher-based patient registries by providing information that only the patient can answer that are an outcome of or impact VHL manifestation.
This longitudinal, IRB-approved trial helps:
* Match patients to clinical trials
* Provide baseline clinical data for research
* Researchers better understand VHL and other forms of cancer, with the goal of finding better treatments, and ultimately, a cure. VHL manifestations, including tumor size and locations
* Manifestations: kidney, CNS, pancreas, adrenal, eye, ear, reproductive tract, thyroid, lung, liver
* Pregnancy, birth control & hormone replacement therapy
* Nutrition & Exercise
* Mental health
* Oral health & tobacco use
Data validation is integral to any forms of research. As such, MyVHL participants are requested to provide medical records, such as scans and reports in order to authenticate their data.
In order to preserve the functions of the affected organs, tumors are watched over time and only removed when necessary, This gives researchers a unique opportunity to understand factors affecting tumor development and growth rate.
You can provide a crucial piece of the puzzle needed to fully understand these conditions and find a cure. You and your family can make a difference. Cancer does not give up its secrets easily but your information, combined with the information from thousands of others will give researchers a chance to fight cancer on your behalf.
Don't let your information be the missing piece. Register and participate in the Databank today. All information that you share with the CGIP Databank will remain secure, confidential and for research purposes only.