Von Hippel Lindau Disease
Conditions
Brief summary
To collect information from patients with vHL disease. Information collected will include data on the status of the disease, any surgeries or therapies patients have received for vHL disease, and quality of life.
Detailed description
Primary Objectives: * Obtain prospective and retrospective data on lesion development, surgical history and systemic therapy use in patients with vHL disease * Assess genotype-phenotype correlation between VHL mutation type and patterns of lesion development * Assess genotype-phenotype correlation for response to belzutifan in an organ-specific manner Secondary Objectives: --Obtain quality of life data in patients with vHL disease
Interventions
None listed
Sponsors
M.D. Anderson Cancer Center
Study design
Observational model
COHORT
Time perspective
OTHER
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Presence of genetic confirmation or clinical criteria consistent with vHL disease. * Ability to understand and the willingness to sign a written informed consent document.
Exclusion criteria
• Patients with psychiatric illness/social situations that would limit compliance with study requirements.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Progression-free survival (PFS) | through study completion; an average of 1 year |
Countries
United States
Contacts
CONTACTEric Jonasch, MD
PRINCIPAL_INVESTIGATOREric Jonasch, MD
ejonasch@mdanderson.org
Outcome results
None listed