Registry for patients with otoferlin-related hearing impairment

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This registry collects detailed information about individuals diagnosed with otoferlin-related auditory synaptopathy and hearing impairment. It aims to gather molecular genetic data and clinical information to support a natural history study of the condition. Conducted in both German and English, the study follows ethical guidelines and has received approval from the University Medical Center Göttingen's Ethics Committee. The primary goal is to enhance understanding of the condition and facilitate future research and tailored therapies.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* A molecular genetic diagnosis involving biallelic variants in otoferlin (OTOF) and audiometry

Exclusion Criteria:

* Patients with evidence of non-OTOF molecular genetic diagnoses

Where it's running

• University Medical Center Goettingen
  Goettigen, Lower Saxony, Germany Recruiting

Study contacts

• Principal investigator: Bernd Wollnik, MD — University Medical Center Goettingen
• Study coordinator: Barbara Vona, PhD
• Email: barbara.vona@med.uni-goettingen.de
• Phone: +49-551-38-51337

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

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• Registry for patients with CABP2-related hearing impairment

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• Improving hearing tests for infants with hearing loss using brain imaging

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• Evaluating a noise reduction algorithm for cochlear implant users

  This study is testing a new noise reduction tool to see if it helps people aged 12 and older with cochlear implants understand speech better in noisy places.

  Recruiting NYU Langone Health · New York, New York · NCT05805384

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.