NCT00005902Active, not recruiting
Study of Brain and Spinal Cord Tumor Growth and Cyst Development in Patients With Von Hippel Lindau Disease
A Prospective Natural History Study of VHL Patients With CNS Hemangioblastomas
Source: ClinicalTrials.gov · Last updated 31 Aug 2026
Brief summary (registry, in English)
The purpose of this study is to learn more about the growth of brain and spinal cord tumors and cysts that develop in association with them in patients with von Hippel-Lindau disease. It will examine how fast the tumors grow and try to determine what factors (for example, puberty , pregnancy, menopause, blood proteins, etc.) affect their growth. Patients between the ages of 8 and 75 years who are enrolled in NIH s study of von Hippel-Lindau disease may be eligible for this 5-year study. Participants will have magnetic resonance imaging (MRI) of the brain and spinal cord and a thorough neurological history and examination at the start of the study. A blood sample will be taken for analysis of factors (hormones or other proteins) that may predict tumor growth. Follow-up clinic visits every 6 months will include a physical and neurological examination, blood tests, and MRI scans of the brain and spine. If symptoms or tumor growth requires more frequent follow-up, scans will be done at 3-month intervals. Surgical removal of brain and spinal cord tumors is currently the treatment of choice when these lesions cause neurological problems. A better understanding of which tumors are likely to grow and which will remain stable may help guide physicians in treatment decisions and avoid unnecessary procedures.
- Status (registry)
- Active, not recruiting
- Study type
- Observational
- Enrollment
- 250 (actual)
- First submitted
- 6 Jun 2000
- Start date
- Feb 2001
- Lead sponsor
- National Institute of Neurological Disorders and Stroke (NINDS)
- Diseases
- Childhood cancers
- NCT number
- NCT00005902
What you commit to
- Study type: Observational
- Participants enrolled: 250
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Prior treatment
- Contraindication to MRI scanning such as surgery that involves metal clips or wires which might be expected to cause tissue damage or produce image artifacts.
Other illness
- Clinically unstable condition.
Criteria the registry did not label
- INCLUSION CRITERIA:
- Ages 8-75.
- Confirmed diagnosis of von Hippel-Lindau disease.
- Presence of one or more cerebral, cerebellar or spinal cord hemangioblastomas on screening MRI.
- Able to give informed consent (or assent), or have a parent able to provide informed consent if a child.
- Karnofsky Performance Scale Score greater than or equal to 60.
- Have the capacity to undergo serial MRI scanning of the CNS without IV sedation.
Age in the registry: 8 years to 75 years · Sex: All · Does not accept healthy volunteers
Sites (1)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| National Institutes of Health Clinical Center Coordinator of this site? Confirm its status | Bethesda | United States | Unknown status |
This page is information, not medical advice. Discuss any trial with your doctor.