Studies at NCI Seeking Patients

There are two studies going on at the U.S. National Cancer Institute in Bethesda, Maryland. Patients may apply for enrollment in the study.

Genetic Study of Patients with Inherited Urologic Malignancies

Looking for participants who have VHL cysts and/or tumors in the kidney. Protocol ID: NCI-89-C-0086. The study will identify the particular genetic mutation in the patient, and correlate this genotype with the particular disease expression, presenting age, clinical manifestations, rate of tumor growth, and rate of recurrence. .

This is not a treatment protocol, but is a study of the "natural history" of tumors, watching how they grow over time. People who enroll in this study would receive genetic counseling, a complete physical examination, and an expert opinion at the NCI at no charge to them other than their initial travel to and from the NCI. NCI will collect blood and tissue samples. Another benefit for patients is knowing they are contributing to fighting cancer that indeed may affect their future generations. If patients are accepted into the study, future travel to NCI are paid for by NCI, with follow-up visits every 3 months to 3 years, depending on the specific condition. The patient may incur some hotel charges beyond a daily stipend that is given to them. A total of 2,300 patients will be seen as part of this study.

Vaccine Therapy with Tumor-Specific Mutated VHL Peptides in Adult Cancer Patients with Renal Cell Carcinoma

Please note: This study is NOT for people with VHL.  See important update June 2001.

Looking for volunteers to try an experimental immunological therapy. Protocol ID 98-C-0139. The study will administer a vaccine concocted from the patient’s own cells, to determine whether the VHL tumor suppressor protein can be immunologically targeted by vaccination. The study proposes to treat patients with sporadic RCC who carry VHL mutations in their tumors with corresponding mutant VHL peptide vaccination. If, in the opinion of the principal or associate investigators, it is not in the best medical interest of the patient to enter this study, the patient will not be eligible.

For additional information or to apply for inclusion in either of these studies, please contact

Deborah Pearson, Director of Outreach and Patient Recruitment, 
National Cancer Institute, Division of Clinical Sciences, 
Building 10, Room 12N214, 
Bethesda, Maryland 20892. 
Telephone: +1.301.435.7854; 
Pager: 1.888.516.3804; 
Fax: +1.301.594.7951; 
E-mail: pearsond@mail.nih.gov

Please note: This study is NOT for people with VHL.  See important update June 2001.

As printed in the VHL Family Forum  9:1, March 2001.  For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.