Update on Clinical Trials

We have created this new 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 - Federal

General:

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 call Lindsay Middelton at 301-402-7911.

A trial using Sutent to stabilize or shrink any VHL-associated tumor is open as of May 2006 at M.D. Anderson in Houston.

A trial using AZ6474 from Astra Zenaca is now open at the US NIH. See the article for details.

Eye:

Sutent (oral sunitinib malate) is being tried for tumors of the optic nerve in people with VHL at the National Eye Institute (NEI) of the U.S. National Institutes of Health (NIH).. See article by Dr. Chew about this study. People who are interested in the NEI/NIH trial of Sutent for optic nerve tumors associated with VHL, please contact Katherine Shimel, RN at Katherine.Shimel@nih.gov or by telephone:  (301 402 2863).

Avastin (Bevacizumab) is being tried for macular degeneration and may be appropriate also for VHL. Please check with Dr. Chew before proceeding with a local doctor. We would like to compile results from all attempts with this drug. Avastin is on the market for use with metastatic colon cancer, and we would all like to learn how effective this off-label use of Avastin might be. Please contact Dr. Emily Chew or her coordinator, Katherine Shimel at +1-301-402-2863.

Clinical Trial for Eye Lesions - open as of January 2005

Macugen trial complete - papers coming out

VHL trial with Sutent open in Houston as of May 2006

Central Nervous System (brain, spinal cord):

VHL trial with Sutent open in Houston as of May 2006

There is another Sutent Trial for CNS lesions at Memorial Sloan-Kettering in New York, with a very few slots for people with hemangioblastomas.

Dr. Heiss at the U.S. NIH is conducting a study of the Surgical Treatment of Syringomyelia or syrinx, a large and growing cyst in the spinal cord.

The U.S. NIH Neurological Institute (NINDS) has a protocol for long-term study of the "natural history" of brain and spinal tumors. How do they grow over time? As of 26 September 2005 this NIH protocol is filled. Results will be reported when they become available.

Kidney:

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.

Here are some options for people with VHL, who do not have metastatic disease (the cancer has not spread to other organs). People with mets may also inquire.

Dr. David McDermott of the Renal SPORE of the Dana Farber/Harvard Cancer Center in Boston is in touch with many treatments and clinical trials for kidney cancer. 617-667-1930 www.dfhcc.harvard.edu/renalcancer

Kidney Pre-Surgery Clinical Trial - open as of August 2004

Nexavar from Bayer

Sutent from Pfizer

• VHL trial open in Houston as of May 2006

Avastin - trial under consideration

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 www.gucancerdoc.com 713-441-7934

Dr. Eric Jonasch of M.D. Anderson Cancer Center in Houston has opened (May 2006) a clinical trial to test the effectiveness of Sutent with VHL kidney cancer and other VHL tumors, hoping to stabilize or shrink tumors, and prevent metastasis.

Early 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.

Pancreas:

Anyone with VHL and a hard tumor in the pancreas may apply to be part of a study to further understand the nature and development of tumors of the pancreas in VHL.

Please contact:
Steven K. Libutti, M.D., Senior Investigator
Surgery Branch, Center for Cancer Research
National Cancer Institute, Bethesda, MD
Tel: 301-496-5049; Fax: 301-402-1788

Status report, June 2007 - still open

VHL trial with Sutent open in Houston as of May 2006

Pheos:

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.

The doctor should send a letter of referral to:

Karen Adams, CRN, MSN
Assistant to Dr. Pacak
National Institute of Child Health & Human Development
10 Center Drive
Bethesda, MD 20892
Fax: +1-301-402-0884

Federal:

Clinical trials receiving funding from the U.S. government are listed at clinicaltrials.gov. Click here to see the current listing.

We need your help! Please give generously to preserve this service and to fund research. Thank you!