Von Hippel-Lindau Disease Clinical Trial
Official title:
Retrospective Case Series of Trans-scleral Cryotherapy for Retinal Hemangioblastoma
Verified date | June 4, 2024 |
Source | National Institutes of Health Clinical Center (CC) |
Contact | n/a |
Is FDA regulated | No |
Health authority | |
Study type | Observational |
Background: Retinal hemangioblastoma (RH) is a tumor. It grows from the retina in the eye. It can threaten a person s vision. Trans-scleral cryotherapy is used to destroy the tumors and minimize the long-term risks of vision loss. RH is a rare condition, often occurring in people with von Hippel-Lindau disease. There are no clinical trials to study how well the treatment works. Researchers want to study the medical records of people with RH who were treated at the NIH eye clinic to learn more. Objective: To analyze clinical data collected over a 20-year span to study consecutive cases of RH managed with trans-scleral cryotherapy at the NIH. Eligibility: People who took part in NIH natural history protocols for which cryotherapy of RH was performed as a standard care measure. Design: Researchers will collect and study data from participants medical charts. Participants will not be contacted because no new data is needed. Researchers were granted a waiver of informed consent for use of these medical records. To protect patient privacy, participants will be assigned an ID number. Their data will be entered into a spreadsheet in a coded fashion. The key to this code will be kept in a secure file. No patient identifying information will be used in the analysis or the publication....
Status | Active, not recruiting |
Enrollment | 25 |
Est. completion date | June 30, 2024 |
Est. primary completion date | June 30, 2024 |
Accepts healthy volunteers | No |
Gender | All |
Age group | 7 Years to 120 Years |
Eligibility | - INCLUSION CRITERIA: 1. Participants were enrolled in NEI and non-NEI natural history protocols, but in all cases, cryotherapy was administered as a standard care measure (not as an investigative treatment). 2. Patients were identified by searching the NIH eye clinic EMR for all of those manifesting one or more retinal hemangioblastomas (with or without associated von Hippel-Lindau disease) treated with cryotherapy. EXCLUSION CRITERIA: None |
Country | Name | City | State |
---|---|---|---|
United States | National Eye Institute (NEI) | Bethesda | Maryland |
Lead Sponsor | Collaborator |
---|---|
National Eye Institute (NEI) |
United States,
Type | Measure | Description | Time frame | Safety issue |
---|---|---|---|---|
Primary | To perform a retrospective analysis of consecutive cases of retinal hemangioblastoma (RH) managed with trans-scleral cryotherapy at the NIH | Some key measures of interest will include treatment outcomes (rate of control of tumors; visual function measures; post-treatment lesion characteristics; sequelae and complications) and association of outcomes with eye and lesion characteristics. | ongoing |
Status | Clinical Trial | Phase | |
---|---|---|---|
Completed |
NCT00970970 -
Visualizing Vascular Endothelial Growth Factor (VEGF) Producing Lesions in Von Hippel-Lindau Disease
|
||
Recruiting |
NCT05810246 -
68Ga-NY104 PET/CT in Von Hippel-Lindau Disease
|
Phase 2 | |
Completed |
NCT01168440 -
Study of Sunitinib in Patients With Von Hippel-Lindau (VHL) Disease
|
Phase 2 | |
Recruiting |
NCT06194669 -
Mechanisms of Somatic Mutation and Tumor Initiation in Pre-malignant Kidney Tubule Cells
|
||
Recruiting |
NCT04074135 -
Natural History and Management of Von Hippel-Lindau (VHL) Associated Pancreatic Neuroendocrine Tumors
|
Phase 2 | |
Enrolling by invitation |
NCT03979833 -
Drivers of Hypoxia-induced Angiogenesis in Tumor Development
|
||
Recruiting |
NCT05737602 -
Promoting Stress Management and Resilience Among Individuals With Von Hippel- Lindau Disease
|
N/A | |
Recruiting |
NCT03749980 -
MyVHL: Patient Natural History Study
|
||
Recruiting |
NCT05424016 -
Propranolol and Von Hippel-Lindau Disease
|
N/A | |
Recruiting |
NCT02420067 -
Screening for Endolymphatic Sac Tumours (ELSTs) in Von Hippel-Lindau (vHL) Patients
|
N/A | |
Completed |
NCT00052013 -
Treatment of Von Hippel-Lindau (VHL)-Related Hemangioblastoma With PTK787/ZK 222584
|
Phase 2 | |
Recruiting |
NCT04924075 -
Belzutifan/MK-6482 for the Treatment of Advanced Pheochromocytoma/Paraganglioma (PPGL), Pancreatic Neuroendocrine Tumor (pNET), Von Hippel-Lindau (VHL) Disease-Associated Tumors, Advanced Gastrointestinal Stromal Tumor (wt GIST), or Solid Tumors With HIF-2α Related Genetic Alterations (MK-6482-015)
|
Phase 2 | |
Recruiting |
NCT03050268 -
Familial Investigations of Childhood Cancer Predisposition
|
||
Completed |
NCT02108002 -
Effect of Vorinostat on Nervous System Hemangioblastomas in Von Hippel-Lindau Disease (Missense Mutation Only)
|
Phase 1 | |
Not yet recruiting |
NCT05843305 -
A Study of BPI-452080 in Subjects With Solid Tumors
|
Phase 1 | |
Completed |
NCT03108066 -
PT2385 for the Treatment of Von Hippel-Lindau Disease-Associated Clear Cell Renal Cell Carcinoma
|
Phase 2 | |
Completed |
NCT00062166 -
Natural History and Management of Pancreatic Lesions in Von Hippel-Lindau Disease
|