The VHL Alliance has awarded over $1.3 million to support research.
Increase in Life Expectancy
Thanks to advances in medical research, clinical guidelines for screening, diagnosis, and treatment have been developed which have contributed to extending VHL patient life expectancy by over 16 years! Our hope is that through continued research efforts, we will find ways of keeping tumors from forming, or at least keeping them small, and reduce the need for surgical intervention.
We are entering an exciting time for VHL Research:
- The VHLA is embarking on a National Patient Registry (clinical database). By consolidating the individual and smaller patient data, we will be better able to answer the more challenging clinical question for which everyone has been grappling. A VHLA Patient Registry Task Force, with representation from the Clinical Advisory Council, the Research Council, and the VHL Clinical Care Centers, is being created to address many important questions and issues relevant to the Patient Registry.
Please contact the VHLA if you would like to learn more about the Patient Registry or would like to join the Task Force: 1-800-767-4845 or firstname.lastname@example.org.
Once the Patient Registry is launched, patients will be informed on how they can confidentially enter their medical information and contribute the this effort.
- We are also entering a period when there will be a series of promising drugs to be tried with the VHL population. With this in mind, the VHLA is forming a Clinical Trials Task Force that represents three important arms of the VHLA: the Clinical Advisory Council, the Research Council, and the VHL Clinical Care Centers. Please contact the VHLA if you would like to join the Clinical Trials Task Force: 1-800-767-4845 or email@example.com.
- A recent compilation of VHL Gene Mutations and associated patient phenotypes was provided by Dr. Rachel Giles. If information from this database is used for publication, please cite the following:
Genetic Analysis of von Hippel-Lindau Disease. Nordstrom-O’Brien M, van der Luijt RB, van Rooijen E, van den Ouweland AM, Majoor-Krakauer DF, Lolkema MP, van Brussel A, Voest EE, Giles RH. Hum Mutat. 2010 May;31(5):521-37. doi: 10.1002/humu.21219. PMID: 20151405