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Update on Clinical TrialsWe have created this index to help you find clinical trials that may be of interest to you. Check this page for the latest information about VHL trials.
If you learn of others not listed here, please do share that information with us! Thank you!
General - Eye - Brain, spine - Kidney - Pancreas - Pheos
The primary VHL research study at the U.S. National Institutes of Health (NIH), organized through Urologic Oncology but not limited to kidney issues, is open to applications from U.S. Citizens, for whom travel and treatment are free. Residents of other countries may apply, but would be responsible for their own travel if accepted. There are a limited number of openings. To inquire, please contact Cris Leite, +1(301)402-6507, leitec@mail.nih.gov
A trial using Pazopanib (Votrient) to stabilize or shrink any VHL-associated tumor is open as of January 2012 at M.D. Anderson in Houston. See details
A trial using Sunitinib (Sutent) to stabilize or shrink any VHL-associated tumor is open as of July 2010 at hospitals in France under Dr. Stéphane Richard of PREDIR. Contact Reza T. Elaidi, PhD, +33(1)5609-2340, reza-thierry.elaidi@egp.aphp.fr or see details
A study using Vandetanib (ZD6474 or Zactima) is still open at the US National Institutes of Health to prevent the growth of new blood vessels in kidney cancer under Dr. Marston Linehan. Contact Sarah Fowler, RN, 301-435-6255, fowlers@mail.nih.gov. See details
Visualizing VEGF-Producing Lesions in VHL. A study to find a better way to visualize and predict the behavior of VHL lesions is open as of Septemer 2009 at the University Medical Centre Groningen, the Netherlands. They welcome applications from any country. Contact Sjoukje Oosting, MD, +31(50)361-2821, s.oosting@int.umcg.nl or Thera Links, MD, PhD, +31(50)361-3962, t.p.links@int.umcg.nl. See details. Note that this study has received partial funding from the VHL Family Alliance.
Clinical trials receiving funding from the U.S. government are listed at clinicaltrials.gov. Click here to see the current listing.
So far, the eye lesions of VHL have not responded well to drug therapy.
Central Nervous System (brain, spinal cord):
CNS tumors did not respond well to the first generation of drugs (Avastin, Sutent). We are hoping for better results with some of the newer drugs that target tumors from more than one angle.
See Pazopanib
Most of the "action" in drug development centers on kidney cancer. There are some 23 new drugs in the "pipeline", coming into clinical trial. So far each drug benefits only about 15% of the patients who take the drug, and the side effects can be heavy. For that reason, most are being tried first with people with metastatic disease. Among other things, they are trying to figure out how to tell which 15% will benefit from which drug, before wasting time on the wrong therapy.
As we move into the next generation of drugs, we are hopeful that there will be greater response from the tumor and fewer side effects.
See Pazopanib, or Sutent, or Vandetanib
Dr. Robert Amato at the Methodist Hospital Research Institute in Houston is working with combinations of drugs to fight metastatic kidney cancer, and has worked with several people with VHL. See his homepage or call +1(888)829-1911.
Effect of Sorafenib (Nexavar) on ccRCC uptake. A study of the physiology of clear cell renal cell carcinoma by determine tumor uptake of a particular contrast agent for imaging studies is open at Radboud University, Nejmegen, the Netherlands. This study invites participants from other countries outside the Netherlands. Contact PFA Mulders, MD, PhD, +31(24)3614048, p.mulders@uro.umcn.nl See details.
NIH Kidney Study. Dr. Linehan at the US National Institutes of Health has an ongoing study of clinical manifestations and molecular bases of heritable urologic malignant disorders, which includes people with kidney lesions of VHL. They are studying how the genotype (where the alteration occurs along the gene) may influence the phenotype (the set of symptoms an individual may experience). People with kidney lesions of VHL are invited to apply from any country, not just the USA. Contact Cris Leite, +1(301)402-6507, leitec@mail.nih.gov See details.
Early Kidney Transplantation: A new research project would like to hear about people who received a kidney transplant less than two years following loss of their kidneys. Please contact the VHL Hotline to share your experience.
Natural History and Management of Pancreatic Lesions in VHL. A new study to identify VHL patients with pancreatic lesions, exaqmine the characteristics of the lesions and how fast they grow, and to find imaging and genetic studies that are most effective in characterizing these lesions, is open as of June 2011 at the US National Institutes of Health under Dr. Electron Kebebew. Contact Krisana Gesuwan, CRNP, +1(301)402-4395, gesuwank2@mail.nih.gov. See details
See also Pazopanib
Diagnosis of Pheochromocytoma. There is a study going on at the U.S. NIH under Dr. Karel Pacak to find better ways to diagnose pheochromocytomas, whether they occur in the adrenal glands or elsewhere in the body. Doctors may refer patients to this study in order to get assistance in diagnosing and localizing the pheo. See details.
The doctor should send a letter of referral to:
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