Otoferlin Patient Registry and Natural History Study
Launched by TOBIAS MOSER · Jul 6, 2023
Trial Information
Current as of June 26, 2025
Recruiting
Keywords
ClinConnect Summary
The Otoferlin Patient Registry and Natural History Study is focused on understanding a specific type of hearing impairment caused by changes in the otoferlin gene. This registry aims to gather detailed information about individuals who have been diagnosed with this condition, which can help researchers learn more about how it affects hearing over time. The study is currently looking for participants of all ages who have a confirmed genetic diagnosis showing that they have two changes (called biallelic variants) in the otoferlin gene along with hearing test results (audiometry).
If you or a family member fits these criteria, you may be eligible to join the study. Participants can expect to provide information about their hearing and health history, which will contribute to a better understanding of this condition. It’s important to note that individuals with other genetic causes of hearing impairment will not be included in this study. By participating, you can help advance research that could lead to improved knowledge and treatment options for those affected by otoferlin-related hearing loss.
Gender
ALL
Eligibility criteria
- 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
About Tobias Moser
Tobias Moser is a leading clinical trial sponsor dedicated to advancing medical research and improving patient outcomes through innovative study designs and rigorous scientific methodologies. With a strong emphasis on collaboration and transparency, Moser's team works closely with healthcare professionals, regulatory bodies, and patient communities to facilitate the development of groundbreaking therapies. Committed to ethical standards and compliance, Tobias Moser strives to enhance the efficiency of clinical trials while ensuring the highest level of safety and care for participants. Through its comprehensive approach, the organization aims to contribute significantly to the healthcare landscape and foster the translation of research findings into tangible clinical applications.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Goettigen, Lower Saxony, Germany
Patients applied
Trial Officials
Tobias Moser, MD
Study Director
University Medical Center Goettingen
Bernd Wollnik, MD
Principal Investigator
University Medical Center Goettingen
Nicola Strenzke, MD
Principal Investigator
University Medical Center Goettingen
Barbara Vona, PhD
Principal Investigator
University Medical Center Goettingen
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported