This study is NOT currently recruiting participants.
Number
00-N-0140
Sponsoring Institute
National Institute of Neurological Disorders and Stroke (NINDS)
Recruitment Detail
Type: No longer recruiting/follow-up only Gender: Male & Female Min Age: 8 Years Max Age: 75 Years
Referral Letter Required
No
Population Exclusion(s)
None
Keywords
Brain; Brainstem; Cysts; Spinal Cord; MRI (Magnetic Resonance Imaging); Natural History
Recruitment Keyword(s)
Condition(s)
Hemangioblastoma; Hippel Lindau Disease
Investigational Drug(s)
Investigational Device(s)
Intervention(s)
Supporting Site
National Institute of Neurological Disorders and Stroke
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.
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INCLUSION CRITERIA: 1. Ages 8-75. 2. Confirmed diagnosis of von Hippel-Lindau disease. 3. Presence of one or more cerebral, cerebellar or spinal cord hemangioblastomas on screening MRI. 4. Able to give informed consent (or assent), or have a parent able to provide informed consent if a child. 5. Karnofsky Performance Scale Score greater than or equal to 60. 6. Have the capacity to undergo serial MRI scanning of the CNS without IV sedation. EXCLUSION CRITERIA: 1. Clinically unstable condition. 2. Being treated by any chemotherapy, immunotherapy, or steroids. 3. Allergy to CT or MRI contrast agents. 4. 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.
1. Ages 8-75.
2. Confirmed diagnosis of von Hippel-Lindau disease.
3. Presence of one or more cerebral, cerebellar or spinal cord hemangioblastomas on screening MRI.
4. Able to give informed consent (or assent), or have a parent able to provide informed consent if a child.
5. Karnofsky Performance Scale Score greater than or equal to 60.
6. Have the capacity to undergo serial MRI scanning of the CNS without IV sedation.
EXCLUSION CRITERIA:
1. Clinically unstable condition.
2. Being treated by any chemotherapy, immunotherapy, or steroids.
3. Allergy to CT or MRI contrast agents.
4. 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.
Principal Investigator
Referral Contact
For more information: