Screening for tumors in patients with von Hippel-Lindau disease
Official title: An International Collaborative Study: Screening for Endolymphatic Sac Tumours (ELSTs) in Von Hippel-Lindau (vHL) Patients
Run by University of Copenhagen · NCT02420067 · Data updated 2026-11-12
This study is testing the best ways to find small tumors in the ears of people with von Hippel-Lindau disease to help catch them early and prevent hearing loss.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 15 Years and up |
| Sex | All |
| Enrollment | 380 (estimated) |
| Sponsor | University of Copenhagen Academic / other |
| Locations | 1 site (Copenhagen, Copenhagen N) |
| Status | Recruiting |
| Started | February 2011 |
| Main results expected | December 2017 |
| Study ends | December 2026 |
| Registry record updated | May 9, 2017 |
| Trial ID | NCT02420067 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study are individuals diagnosed with von Hippel-Lindau disease who are at least 15 years old.
✕Probably not a fit
Patients under the age of 15 or those without a diagnosis of von Hippel-Lindau disease will not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This study investigates the best methods for screening endolymphatic sac tumors (ELSTs) in patients with von Hippel-Lindau (vHL) disease to enable early diagnosis and prevent hearing loss. It involves conducting audiological examinations and MRI scans of the inner ear in vHL patients, regardless of whether they exhibit symptoms. The goal is to identify tumors while they are still small, as early detection can lead to better outcomes and preservation of hearing. The study aims to clarify optimal screening strategies for this patient population.
Why it matters
Potential benefit: If successful, this study could significantly reduce the incidence of hearing loss in vHL patients by enabling earlier detection of tumors.
How similar studies have gone: Previous studies have indicated the importance of early detection of ELSTs in vHL patients, suggesting that this approach may be beneficial, although specific screening strategies have not been extensively tested.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * A diagnosis of vHL (either a carrier of a VHL mutation or vHL diagnosed by clinical criteria, i.e. at least two vHL-related manifestations diagnosed or one vHL-related manifestation diagnosed AND a first-degree relative with vHL) * At least one audiological examination (including an audiogramme) and one MRI examination of the brain also visualizing the inner ear within 12 months of each other Exclusion Criteria: * Children under the age of 15 years
Where it's running
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Department of Cellular and Molecular Medicine, University of Copenhagen
Copenhagen, Copenhagen N, Denmark Recruiting
Study contacts
- Principal investigator: Marie Luise Bisgaard, M.D. — Department of Cellular and Molecular Medicin, University of Copenhagen
- Study coordinator: Marie Luise Bisgaard, M.D.
- Email: mlbi@sund.ku.dk
- Phone: 004531333582
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.