Von hippel-lindau syndrome

Clinical Research/Studies

Is there clinical research happening on von Hippel-Lindau syndrome?

Clinical research trials focused on von Hippel-Lindau (VHL) syndrome are listed on clinicaltrials.gov, a government website that provides regularly updated information about federally and privately supported clinical trials. This may not an exhaustive list of current research. Current studies are looking at ways to screen for certain symptoms of VHL syndrome, various new treatments such as new drug therapies, natural history studies, and studies to try and determine ways to predict the course and prognosis of VHL syndrome in individuals.

For the most up-to-date list, contact clinical trials.gov and search for von Hippel-Lindau syndrome.

References
  • ClinicalTrials.gov website. https://clinicaltrials.gov/ct2/home
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How do I find clinical research on von Hippel-Lindau syndrome?

How do I find clinical research on von Hippel-Lindau syndrome?

To learn about ongoing clinical research into von Hippel-Lindau (VHL) syndrome ask a healthcare provider who specializes in the disorder. Genetic counselors and medical geneticists are also excellence sources of information about ongoing clinical trials and can offer advice about the pros and cons about participating in such a trial.

Ongoing studies for VHL syndrome can also be found on clinicaltrials.gov, a service of the U.S. National Institutes of Health. In Europe, the EU Clinical Trial Register performs a similar service.

Support groups also have information about ongoing clinical trials as well as information and advice about participating in clinical trials. Support groups for VHL syndrome include the VHL Alliance.

References
  • ClinicalTrials.gov website. https://clinicaltrials.gov/ct2/home
  • VHL Alliance website. https://vhl.org/

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