Data Collection for VHL Syndrome
What You Need to Know Before You Apply
What is the purpose of this trial?
This trial aims to gather detailed information from individuals living with Von Hippel Lindau (vHL) disease, a genetic condition that can cause tumor growth in various parts of the body. Researchers seek to understand the current state of the disease, the treatments or surgeries patients have undergone, and the impact on their daily lives. Individuals who have been genetically diagnosed with vHL or meet the clinical criteria for it, and can provide informed consent, might be suitable candidates for this study. As an unphased trial, this study offers a unique opportunity to contribute to a deeper understanding of vHL and potentially improve future care strategies.
Why are researchers excited about this trial?
Researchers are excited about this trial because it focuses on gathering detailed data for patients with Von Hippel Lindau (VHL) disease, a condition that currently relies on surgical interventions and targeted therapies like sunitinib and sorafenib. This data collection protocol aims to provide a comprehensive understanding of the disease progression and the effectiveness of existing treatments in real-world settings. By analyzing this data, researchers hope to uncover new insights that could lead to more effective and personalized treatment strategies for VHL patients in the future.
Who Is on the Research Team?
Eric Jonasch, MD
Principal Investigator
ejonasch@mdanderson.org
Are You a Good Fit for This Trial?
Inclusion Criteria
Timeline for a Trial Participant
Screening
Participants are screened for eligibility to participate in the trial
Data Collection
Collection of prospective and retrospective data on lesion development, surgical history, and systemic therapy use in patients with vHL disease
Quality of Life Assessment
Obtain quality of life data in patients with vHL disease
Follow-up
Participants are monitored for safety and effectiveness after data collection
What Are the Treatments Tested in This Trial?
Find a Clinic Near You
Who Is Running the Clinical Trial?
M.D. Anderson Cancer Center
Lead Sponsor
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