Update on Clinical Trials

Kidney Pre-Surgery Clinical Trial
Clinical Trial for Eye Lesions
Research Project needs Fetal Tissue

See also http://www.vhl.org/trials

Kidney Pre-Surgery Clinical Trial Edited 9/4/04 Sally Fowler. The Urologic Oncology Division of the U.S. National Institutes of Health (NIH) under Dr. W. Marston Linehan has now opened clinical trial, designed as a pre-surgical therapy for kidney cancer. This initial study will be limited to a small number of people with VHL who need kidney surgery.

Patients will receive a drug, 17AAG, an analog of geldanamycin, about three times a month, intravenously in Bethesda, Maryland. Once the kidney tumor has been removed, the tumor will be studied under the microscope to help us learn whether the drug is achieving the right response within the tumor.

If this phase is successful, the study will be opened more widely.

To inquire, contact Sally Fowler, R.N., +1-301-435-6255.

The time commitment is significant, but NIH will pay travel costs for U.S. residents accepted into the trial. People from other countries may apply, but would be responsible for their own travel expenses. For more information, see www.vhl.org/trials

Eye Lesions

Dr. Emily Chew at the National Eye Institute of NIH is opening a trial of Lucentis for VHL in September. Lucentis (previously named rhuFab) from Genentech, is a drug recently approved for use with Age-related Macular Degeneration (AMD). It is an angiogenesis inhibitor, injected directly into the eye, hoping to stabilize or shrink tumors of the retina, especially those on or near the optic nerve for which treatment options are limited.

The study is limited to testing the effectiveness of the drug on eye tumors. Because of the way it is administered, it will likely have little or no effect on other tumors. To inquire, contact Dr. Emily Chew or her coordinator, Katherine Shimel at +1-301-402-2863 For more information, see www.vhl.org/trials The full protocol is available from Ms. Schimel.

Research Project needs Fetal Tissue

If anyone loses a child through miscarriage or decides not to use embryonic material left over from IVF, there is a research project that would appreciate donations of VHL-positive embryonic or fetal tissue for autopsy.

The goal of the project is to determine whether the seeds of tumors in the brain and spinal cord are in fact laid down during embryonic development and only “turned on” at a later time. Understanding this process may help us control tumor growth.

If you have tissue to donate, please call the VHL Tissue Bank at 1-877-221-6374 to arrange transport.

As printed in the VHL Family Forum 12:2, August/September 2004. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.