Cancer in Our Genes International Patient Databank
The Cancer in our Gene International Patient (CGIP) Databank is a patient registry for HLRCC, FD, VHL, BHD, and SDHB patients
Very little is known about the natural history of HLRCC or FD – in other words, who develops which symptoms and when – and such patient registries are vital to finding this information out. This will ultimately enable doctors to give patients improved advice.
The registry is an initiative of the VHL Alliance, and is available on their website. You will be able to set up your own profile and answer questions over time at your own pace. Your data will be secure, and only those researchers known to the VHLA will be allowed to analyse de-identiﬁed information from the data held in the registry.
It is possible that in the future, the information you have entered shows that you are eligible to participate in a clinical trial. In this case, the VHLA will contact you on behalf of the researcher running the trial, and it will be up to you whether you want to respond. You will never be contacted by a researcher directly.
If you would like to read more about the registry, or would like to enter your details, please click the green button below: