Data Collection Protocol for Patients With Von Hippel Lindau Disease

Launched by M.D. ANDERSON CANCER CENTER · Jul 18, 2023

Keywords

ClinConnect Summary

This clinical trial is focused on gathering important information from patients with Von Hippel Lindau (vHL) disease. The goal is to collect data about the condition itself, any treatments or surgeries participants have had, and how living with vHL affects their daily lives. This information will help researchers understand the disease better and improve care for patients in the future.

To participate in this study, patients must have a confirmed diagnosis of vHL disease, whether through genetic testing or specific clinical signs. They should also be able to understand the study details and agree to participate by signing a consent form. Unfortunately, individuals with certain psychiatric conditions that might affect their ability to follow the study rules cannot take part. If eligible, participants can expect to share their health experiences and contribute valuable information to help advance knowledge about vHL disease.

Gender

ALL

Eligibility criteria

• 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.