Welcome!
The MyVHL: Patient Natural History Study is an online registry for people with VHL. It is sponsored by VHL Alliance and hosted by the National Organization for Rare Disorders (NORD®) on their IAMRARE® platform. This registry will collect information from participants (or their authorized representatives) who are affected by VHL.
About MyVHL
The MyVHL: Patient Natural History Study is collecting information about von Hippel-Lindau (VHL), Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC), Birt-Hogg-Dubé (BHD), Succinate Dehydrogenase Complex Subunit B (SDHB) and other related conditions in hopes of finding a cure for these diseases as well as related kidney and adrenal tumors. Learning about their similarities and differences will help scientists understand how these genes work in the cell, and how we might intervene and make a difference.
Von Hippel-Lindau (VHL) is a disease which causes tumors in multiple parts of the body. Since the discovery of the VHL gene in 1993, progress has been made in understanding the processes within the cell governed by the VHL gene. The series of processes (or pathways) controlled by VHL also include the genes for Birt-Hogg-Dubé (BHD), Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC), and Succinate Dehydrogenase Complex Subunit B (SDHB), three other genetic kidney cancer syndromes. Drugs to assist in management of these diseases are beginning to emerge and will need to go through clinical trials to evaluate their effectiveness.
These diseases are rare, which makes it difficult to gather information and develop treatments. The MyVHL: Patient Natural History Study will collect information from patients all over the world and could help researchers have a better understanding of VHL and associated diseases. The rarity of these diseases makes it difficult to conduct large clinical trials. To address these deficiencies, the VHL Alliance, in collaboration with the National Organization for Rare Disorders (NORD), has developed a patient databank to collect detailed medical information on patients with VHL, BHD, HLRCC, SDHB and related tumors, to help discover possible factors contributing to disease pathogenesis/progression, and to help evaluate efficacy of novel therapies.
For more information, visit: vhl.org/MyVHL.
We Promise
By participating in the MyVHL: Patient Natural History Study, you become part of a community created to energize, inform, engage and support VHL, BHD, and HLRCC research. We come together to help find better treatments, more quickly. When you add your voice, VHLA makes a steadfast promise:
- We promise to safeguard your information and protect your privacy.
- We promise that you own your health information, forever.
- We promise that you control who can access your health information.
- We promise not to share your contact information or identifying information, unless you tell us to reveal it.
- We promise to honor your preferences about the types of information we send you.
- We promise that you can stop participating in MyVHL at any time and have your information removed from the registry.
We promise to do everything we can to ensure patient voices are heard.
What is a Patient Registry?
A patient registry is a collection of standardized information about a group of patients who share a condition. The information may be used for a variety of purposes such as conducting natural history studies and supporting disease-specific clinical trial recruitment. The MyVHL: Patient Natural History Study serves to:
- Support the design of clinical trials that explore new rare disease treatments.
- Describe the people who have VHL and to better understand the variability and stages of VHL;
- Understand how VHL changes over a person’s lifetime;
- Learn about clinical practice patterns and variations over the course of treatment;
- Help to develop best practices, management guidelines, and recommendations so that clinicians can know how to give the best care to improve the quality of life and outcomes of people with VHL; and
- Identify people with VHL who might be willing to take part in other research studies or clinical trials. You will be able to choose whether you want to hear about these other studies.
What types of data will be collected in the MyVHL: Patient Natural History Study?
The MyVHL: Patient Natural History Study collects data on the following topics:
- Socio-demographics
- Medical history and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
Is the data secure?
The MyVHL: Patient Natural History Study follows strict government guidelines to assure patient information is protected. The platform is served over HTTPS, which means that the data is encrypted when being sent from the user’s browser to the NORD servers. The data is also kept encrypted in the NORD database (data at rest). Communications between the registry platform application server and the database are also encrypted. As with any information one provides electronically, there is a very rare chance that privacy could be compromised. However, the registry and the security measures minimize the chance of this occurring.
Video links:
Janet Woodcock, Former Director CDER FDA on NORD Registry Program