USHTRUST Registry – Set up by the Usher Coalition, the USHTRUST Registry is the largest international database of individuals with Usher syndrome, and a tool to connect, inform, and support individuals within the Usher community. Members of the USH Trust are the first to learn about the latest research opportunities.
Awareness of Usher Syndrome and the Need for Multidisciplinary Care: A Cross-Occupational Survey of Allied Health Clinicians – UsherKids Australia, together with leading researchers from the University of Melbourne, has recently published research investigating how aware relevant allied healthcare professionals are of the cause, common symptoms, and professionals who play a key role in the care of Usher syndrome. This research will help us provide further, targeted professional development to relevant healthcare workers so as to improve the care our families receive.
Partnership for Sight Video (National Institute for Health and Care Research) – A brief video explaining some of the research being conducted into treatments for inherited eye diseases from Moorfields Eye Hospital, UK.
Exploring the support needs of parents of young children with Usher syndrome: A qualitative approach – UsherKids Australia, together with leading researchers from the University of Melbourne, has recently published research exploring the support needs of parents of children with Usher syndrome Type 1 when their child was aged 0 to 5 years. Findings provide rich information for relevant support groups, policymakers, individual healthcare professionals, and professional governing bodies regarding the education of stakeholders and development and implementation of best-practice treatment guidelines.
Usher 1F Collaborative Research (Usher 1F Collaborative) – Information on current research initiatives for those diagnosed with Usher syndrome, type 1F.
Evaluation of Sleep Quality and Fatigue in Patients with Usher Syndrome Type 2a – The purpose of this study was to understand the prevalence, level, and nature of sleep problems and fatigue experienced by Usher syndrome type 2a (USH2a) patients, with results demonstrating a high prevalence of fatigue and poor sleep quality experienced by patients with USH2a.
Outcomes of cochlear implantation in children with Usher syndrome: a long-term observation – The purpose of this study was to evaluate auditory performance and speech intelligibility of children with Usher syndrome up to 10 years after cochlear implantation.