Creating a prediction model for VHL-related kidney cancer

Establishment of a Multidimensional Prediction Model for the Natural Course of VHL Disease-related Renal Cell Carcinoma Based on Accurate Genotyping: a Population-based Study

Observational Peking University First Hospital · NCT06391879

This study is trying to create a model to help predict how kidney cancer linked to von Hippel-Lindau syndrome will progress, so doctors can better time surgeries and improve outcomes for patients.

Quick facts

Study typeObservational
Enrollment300 (estimated)
Ages18 Years to 80 Years
SexAll
SponsorPeking University First Hospital Academic / other
Locations1 site (Beijing, Beijing)
Trial IDNCT06391879 on ClinicalTrials.gov

What this trial studies

This observational study aims to establish a multidimensional prediction model for the natural course of renal cell carcinoma (RCC) associated with von Hippel-Lindau (VHL) syndrome. It will analyze both retrospective and prospective data to identify factors influencing the progression of VHL-related RCC, which differs from sporadic cases. The study will utilize advanced techniques such as single cell sequencing, whole genome sequencing, and metabolomic analysis to monitor molecular evolution in selected patients. By improving the prediction of optimal surgical intervention timing, the study seeks to enhance patient outcomes and reduce the frequency of surgeries.

Who should consider this trial

Good fit: Ideal candidates include individuals diagnosed with VHL syndrome who have undergone comprehensive organ assessments.

Not a fit: Patients who do not meet the clinical diagnostic criteria for VHL disease or have other hereditary RCC syndromes may not benefit from this study.

Why it matters

Potential benefit: If successful, this study could lead to more personalized treatment strategies for patients with VHL-related RCC, potentially improving their prognosis.

How similar studies have performed: While there have been studies on VHL syndrome, this specific approach to creating a prediction model using advanced sequencing techniques is relatively novel.

Eligibility criteria

Show full inclusion / exclusion criteria
Inclusion Criteria:

* Diagnosis of VHL syndrome based on clinical diagnostic criteria or genetic test results of syndrome
* Upon enrollment, multiple organ assessments for VHL syndrome should be completed, including fundus examination, CT/MR examination of the brain, spinal cord, and abdominal and pelvic organs.
* If subjects have undergone surgery for renal tumors, the follow-up observation time in each branch center before surgery should be more than 12 months, and imaging examinations should be performed at least once every 6 months.

Exclusion Criteria:

* Do not meet the clinical diagnostic criteria for VHL disease or the genetic test is negative
* Other hereditary RCC syndromes

Where this trial is running

Beijing, Beijing

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions VHL SyndromeRenal Cell CarcinomaVHLVHL syndromeRenal cell carcinoma
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.