The MyVHL: Patient Natural History Study is a patient registry for Birt-Hogg-Dubé Syndrome (BHD), Von Hippel Lindau Syndrome (VHL), Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) and Succinate Dehydrogenase Complex Subunit B (SDHB) patients.
Very little is known about the natural history of BHD – 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 more accurate advice.
The registry is an initiative of the VHL Alliance. 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 the information in the registry. Researchers will only be given an anonymised dataset, meaning that although they will be able to see information about your health, they will not see any identifying information (e.g. name, address etc).
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 purple button above. If you have any questions or thoughts please contact the VHL alliance at MyVHL@vhl.org.