, a precision genetic medicine company developing gene therapies to restore and preserve hearing, announced the launch of The Sing Registry: the Genetic Sensorineural Hearing Loss Registry. The Sing Registry is a new, observational research study focused on understanding the lifelong impact of genetic sensorineural hearing loss (SNHL), according to the company.
The Sing Registry is sponsored by Akouos, with plans to create a consortium that builds upon the foundational research of genetic hearing loss established by investigators at the University of Iowa, Mass Eye & Ear and Harvard Medical School,and Vanderbilt University, among others.
Michael McKenna, MD, Akouos Co-founder and Chief Medical Officer, will present details of the Registry, along with preclinical data from Akouos’s lead program, AK-OTOF, during the Frank M. Rizer Memorial Lecture at the 54th Annual American Neurotology Society Fall Meeting in New Orleans. The presentation, “Emerging Role for Gene Therapy in the Treatment of Sensorineural Hearing Loss,” will take place Saturday, September 14, 2019 at 2:25 pm CT.
“Restoring and preserving hearing loss remains a significant challenge today, and Akouos is committed to reducing that challenge by creating precision genetic medicines intended to treat people with genetically driven forms of hearing loss,” said McKenna. “The launch of the Sing Registry is an important step forward in the field. With the emergence of genetic testing and the need for clinical, epidemiological, and genotypic/phenotypic relationships in genetic hearing loss, this registry is designed to provide a structured basis for research efforts to further understand implicated genes, support established diagnostic methods, advance the clinical characterizations of hearing loss, and inform future therapeutic development.”
About the Sing Registry
The Sing Registry is a long-term observational study designed to assess how genetics affect changes in hearing over time and to better characterize the impact of different treatment options and interventions, such as hearing aids, cochlear implants, or new investigational therapies, in people with genetic sensorineural hearing loss (SNHL). The registry will enroll participants who first were diagnosed with genetic SNHL (confirmed via genetic testing), or presented with SNHL with a suspected genetic etiology (based on clinical presentation), before the age of 55 years. The Registry is designed to provide the research community with a broad resource to centralize genetic SNHL participant data longitudinally to advance understanding of genotype/phenotype relationships and natural history within genetically-defined populations. For more information on the Registry or on how to participate, please visit: www.SingRegistry.com.