Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
100 participants
OBSERVATIONAL
2023-02-21
2048-02-21
Brief Summary
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Detailed Description
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Main objective criterion:
To increase understanding of natural history, types of genetic variants and to facilitate clinical and basic research on otoferlin-associated hearing impairment.
Secondary objective criterion:
To improve knowledge to better characterize individuals with otoferlin-associated hearing impairment in the long term and create prerequisites for improved, patient tailored therapy and care.
Conditions
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Study Design
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CASE_ONLY
OTHER
Study Groups
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Otoferlin participant group
Individuals with hearing impairment who have a molecular genetic diagnosis involving otoferlin
Molecular genetic testing and audiometry
Genetic testing and audiometry are the interventions of interest
Interventions
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Molecular genetic testing and audiometry
Genetic testing and audiometry are the interventions of interest
Eligibility Criteria
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Inclusion Criteria
Exclusion Criteria
ALL
No
Sponsors
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Tobias Moser
OTHER
Responsible Party
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Tobias Moser
Prof.
Principal Investigators
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Tobias Moser, MD
Role: STUDY_DIRECTOR
University Medical Center Goettingen
Bernd Wollnik, MD
Role: PRINCIPAL_INVESTIGATOR
University Medical Center Goettingen
Nicola Strenzke, MD
Role: PRINCIPAL_INVESTIGATOR
University Medical Center Goettingen
Barbara Vona, PhD
Role: PRINCIPAL_INVESTIGATOR
University Medical Center Goettingen
Locations
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University Medical Center Goettingen
Goettigen, Lower Saxony, Germany
Countries
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Central Contacts
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Facility Contacts
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References
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Vona B, Wollnik B, Strenzke N, Moser T. Catching up but still miles behind-a patient registry for otoferlin. Exp Mol Med. 2024 Jun;56(6):1472-1473. doi: 10.1038/s12276-024-01247-6. Epub 2024 Jun 3. No abstract available.
Provided Documents
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Document Type: Study Protocol: Study Protocol: Study Information English
Related Links
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Registry website in German
Registry website in English
Other Identifiers
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17/8/22 v1.1 - 2023-02528
Identifier Type: -
Identifier Source: org_study_id
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