Blog/group email/opinion
- The broader category of clinical research would include My VHL: Patient Natural History Study. However, clinical trials have been performed to test several anti-angiogenic drugs on their effectiveness in limiting VHL manifestations -VHLA handbook*
- News of the current state of VHL research and clinical trials is posted on the VHL Alliance website at vhl.org/clinical-trials - - VHLA handbook*
- Definition: “Clinical trials are research studies that test how well new medical approaches work in people…”- Medline Plus.gov
Sample "questions about clinical trials *:
- Is there a clinical trial that would be appropriate for me? (To your doctor)
- If I take this treatment, does it make me ineligible for any other treatments/programs?
- Will I still be able to visit my current doctor if I take this treatment? If I cannot see my doctor, will my doctor be given information about my treatment?
- Will I need to travel anywhere to receive the treatment and if so, where to, how frequently, and for how long? Is support available for me to pay for this travel?
- Will I have to pay for the treatment, or will it be covered from another source such as my health care system, insurance plan, or the company making the investigational medicine?
- What will I be financially responsible to pay?
- If I have side effects and become hospitalized, who will pay for the treatment?
(I think that the VHLA website would cover any trials in Canada, but here are suggested sites if you want to double-check. Personally, if I wanted further information on a US trial, I would directly contact them. I’ve also heard of Canadians travelling, at their expense, to the US for VHL clinical trials or treatment between the 1980s and early 2000s.)
Canadian websites about clinical trials:
*“What You Need to Know About VHL: A reference handbook for people with von Hippel-Lindau, their families, and their medical teams”, pages 82-92 - VHL Alliance, Edition 6, Revised 2020
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