Information about participation in a research project about screening for inner ear tumors in von Hippel-Lindau disease patients

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Information about participation in a research project about
screening for inner ear tumors in von Hippel-Lindau disease patients

We would like to ask you to participate in research project about von Hippel-Lindau disease (in short vHL) patients and screening for tumours in the inner ear.

What is the study for?

In recent years, it has been shown that up to 16% of persons with vHL develop tumours in the inner ear, so called endolymphatic sac tumours (in short ELSTs). These tumours are benign but can cause permanent hearing loss and other symptoms such as tinnitus and dizziness, as they grow. If ELSTs are diagnosed while they are still small, it is possible to treat them and prevent worsening of hearing loss. Today it is not known which is the best method for screening for ELSTs, and this research project aims to investigate the usefulness of hearing tests and find the most optimal strategy for ELST screening. This study will help improve future screening for all persons diagnosed with vHL.

Who is eligible?
Persons diagnosed with vHL, either by clinical diagnosis (based on manifestations) or molecular diagnosis (based on a gene test) and are at least 15 years old.

What does it involve?
If you have already had a hearing test (audiological examination) and an MRI of the brain, we ask your permission to collect and evaluate your hospital records which contain the results of these of your examinations.
If you have not had these examinations or if there was more than 12 months between them, your local project manager may ask you to have a hearing test and/or an MRI of the brain. The performance of these examinations is normal procedure in screening of vHL patients in many countries.
Participants will be told the result of their tests by their local project manager and in case any ELSTs are diagnosed, the participant will offered treatment according to local recommendations.

Participants will be asked to participate in follow up examinations (hearing test and/or MRI of the brain) after 2, 5, and 10 years.

If you choose to participate, you will be asked to sign a consent form.

Rights of participants:
Participation in this research project is voluntary, and if you choose not to participate, it will not affect your future treatment. If you choose to participate, you can always change your mind if you no longer wish to participate.
This research project is part of a large international study involving vHL patients in many countries across the world, and all the collected information in analyzed altogether in Denmark.
Information about each participant will be coded so that only the local project manager will know your identity, and confidentiality is assured.

Would you like to know more?
If you need more information, please contact your local project manager

Inset local contact information

Responsible project team:

MD, Specialist in clinical genetics Marie Luise Bisgaard and
MD, PhD student Marie Louise Mølgaard Binderup,

Department of Cellular and Molecular Medicine, University of Copenhagen,

The Panum Institute, 24.4
Blegdamsvej 3
DK-2200 Copehagen N
Telephone: +45 30 59 01 73
E-mail: /

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