{"id":3059,"date":"2022-04-08T13:52:32","date_gmt":"2022-04-08T12:52:32","guid":{"rendered":"https:\/\/www.sense.org.uk\/?page_id=3059"},"modified":"2025-03-31T10:51:50","modified_gmt":"2025-03-31T09:51:50","slug":"usher-syndrome-information-for-healthcare-professionals","status":"publish","type":"page","link":"https:\/\/www.sense.org.uk\/information-and-advice\/for-professionals\/information-and-resources-for-healthcare-professionals\/usher-syndrome-information-for-healthcare-professionals\/","title":{"rendered":"Usher syndrome: information for healthcare professionals\u00a0"},"content":{"rendered":"\n<p class=\"is-style-intro\">This page gives an overview of Usher syndrome for healthcare professionals.&nbsp;<\/p>\n\n\n\n<p>It covers diagnosis, guidance for giving patients a diagnosis, genetic causes, hearing loss and sight loss management, dual sensory clinics and local authority deafblind guidance.&nbsp;<\/p>\n\n\n\n<div class=\"wp-block  slab    is-style-textured-primary-tint-10  align-full\">\n  <div class=\"wrap\">  <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\"><strong>Sense&#8217;s children&#8217;s service<\/strong>s&nbsp;<\/h2>\n\n\n\n<p>Our Children\u2019s Specialist Services provide further advice and support to families and young people, and can connect you with other families living with Usher. Contact us at <a href=\"mailto:info@sense.org.uk\">info@sense.org.uk<\/a>.<\/p>\n\n<\/div>\n  <\/div>\n<\/div>\n\n\n\n  <div class=\"wp-block  box    is-style-textured-grey-tint-10  align-wide\">    <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\"><strong>Sections on this page:<\/strong>&nbsp;<\/h2>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li><a href=\"#diagnosing-usher\">Diagnosing Usher syndrome<\/a><\/li>\n\n\n\n<li><a href=\"#giving\">Giving a patient the diagnosis<\/a><\/li>\n\n\n\n<li><a href=\"#genetic\">Genetic causes of Usher syndrome<\/a><\/li>\n\n\n\n<li><a href=\"#hearing-loss-management\">Hearing and sight loss management<\/a>&nbsp;<\/li>\n\n\n\n<li><a href=\"#dual-sensory\">Dual sensory clinics<\/a><\/li>\n\n\n\n<li><a href=\"#deafblind-guidance\">Deafblind guidance for local authorities<\/a>&nbsp;<\/li>\n\n\n\n<li><a href=\"#resources\">Resources<\/a>&nbsp;<\/li>\n<\/ul>\n\n<\/div>\n  <\/div>\n\n\n\n\n<h2 class=\"wp-block-heading\" id=\"diagnosing-usher\"><strong>Diagnosing Usher syndrome<\/strong><\/h2>\n\n\n\n<p>Diagnosis of Usher syndrome requires genetic testing to obtain a molecular diagnosis and inform future management of the condition, according to type.&nbsp;<\/p>\n\n\n\n<p>This can be achieved through a variety of\u202fnext generation sequencing methods:&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li>Targeted gene panels (retinal and deafness).&nbsp;<\/li>\n\n\n\n<li>Whole exome sequencing.&nbsp;<\/li>\n\n\n\n<li>Whole genome sequencing.&nbsp;<\/li>\n\n\n\n<li>Targeted exome sequencing.&nbsp;<\/li>\n<\/ul>\n\n\n\n<p>For more on genetic testing, including next generation sequencing, see <a href=\"#gene-vision\">gene vision, clinical genetic testing resources<\/a>.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"giving\"><strong>Giving a patient the diagnosis<\/strong>&nbsp;<\/h2>\n\n\n\n<p>When patients and their families have to hear difficult information, how that news is delivered has an impact on how they respond.&nbsp;&nbsp;<\/p>\n\n\n\n<p>This is true with a diagnosis of Usher syndrome.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Based on what people have told us, we recommend the following good practice principles when communicating the diagnosis:&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li>Prepare the person for a possible diagnosis of Usher.&nbsp;<\/li>\n\n\n\n<li>Make sure they have a choice about who is present with them to hear the diagnosis.&nbsp;<\/li>\n\n\n\n<li>Give the patient as much information about Usher syndrome as they need.&nbsp;<\/li>\n\n\n\n<li>Provide clear, accessible information to take away on the day&nbsp;<\/li>\n\n\n\n<li>Give the person the opportunity and time to ask questions and talk about their feelings.&nbsp;<\/li>\n\n\n\n<li>Provide reassurance and tell them where they can get support.&nbsp;<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"genetic\"><strong>Genetic causes of Usher syndrome<\/strong>&nbsp;<\/h2>\n\n\n\n<p>Usher syndrome is a rare genetic condition that affects between 4 and 17 people in 100,000 worldwide.&nbsp;<\/p>\n\n\n\n<p>Usher syndrome is caused by mutations in several different genes:&nbsp;&nbsp;<\/p>\n\n\n\n<p><strong>Usher type 1<\/strong>&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li>MYO7A&nbsp;<\/li>\n\n\n\n<li>USH1C\u202f&nbsp;<\/li>\n\n\n\n<li>CDH23\u202f&nbsp;<\/li>\n\n\n\n<li>PCDH15\u202f&nbsp;<\/li>\n\n\n\n<li>USH1G\u202f&nbsp;<\/li>\n\n\n\n<li>CIB2\u202f&nbsp;<\/li>\n<\/ul>\n\n\n\n<p><strong>Usher type 2<\/strong>&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li>USH2A<strong>\u202f<\/strong>&nbsp;<\/li>\n\n\n\n<li>ADGRV1&nbsp;<\/li>\n\n\n\n<li>WHRN\u202f&nbsp;<\/li>\n<\/ul>\n\n\n\n<p><strong>Usher type 3<\/strong>&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li>CLRN1<strong>\u202f<\/strong>&nbsp;<\/li>\n\n\n\n<li>HARS1\u202f&nbsp;<\/li>\n<\/ul>\n\n\n\n<p>These genes provide instructions for making proteins involved in normal hearing, balance, and vision.&nbsp;&nbsp;<\/p>\n\n\n\n<p>In the inner ear, the proteins are involved in the development and function of specialised hair cells that help to transmit sound and signals from the inner ear to the brain.&nbsp;&nbsp;<\/p>\n\n\n\n<p>In the retina, the proteins help maintain light-sensing cells called rod photoreceptors for vision in low light, and cone photoreceptors for colour vision and vision in bright light.&nbsp;&nbsp;<\/p>\n\n\n\n<p>For some of the proteins related to Usher syndrome, their exact role in hearing, balance, and vision is unknown.&nbsp;<\/p>\n\n\n\n<p>Most of the gene mutations responsible for Usher syndrome lead to a loss of hair cells in the inner ear, and a gradual loss of rods and cones in the retina, causing hearing loss, sight loss and balance problems.&nbsp;<\/p>\n\n\n\n<p>In some people with Usher syndrome, the genetic cause of the condition has not been identified.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Current research suggests that several additional genes may be associated with this disorder.&nbsp;<\/p>\n\n\n\n<div class=\"wp-block  slab    is-style-textured-secondary-tint-10  align-full\">\n  <div class=\"wrap\">  <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\" id=\"hearing-loss-management\"><strong>Hearing loss management<\/strong>&nbsp;<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Usher type 1<\/strong>&nbsp;<\/h3>\n\n\n\n<p>Usher type 1 patients are normally offered bilateral cochlear implants within the first two years of life, enabling the development of oral communication and open set speech perception.&nbsp;&nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Usher types 2 and 3<\/strong>&nbsp;<\/h3>\n\n\n\n<p>Patients with Usher types 2 and 3 benefit from <strong><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/technology\/assistive-technology-for-people-with-hearing-loss\/hearing-aids\/\">hearing aids<\/a><\/strong>, but may need <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/technology\/assistive-technology-for-people-with-hearing-loss\/hearing-implants\/\">cochlear implants<\/a> with progressive hearing loss.\u00a0\u00a0<\/p>\n\n\n\n<p>Given the increasing recognition of Usher syndrome among children, especially type 1, cochlear implants are being fitted much earlier, allowing verbal communication to develop normally.&nbsp;&nbsp;<\/p>\n\n\n\n<p>However, this may not be the case for many older patients, whose hearing loss was not detected earlier in their childhood due to lack of awareness of Usher syndrome.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Most of these patients use <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/communication\/sign-language\/\">sign language<\/a> to communicate instead. Among those who are also severely visual impaired, who cannot use conventional sign language, hands-on signing is an alternative. &nbsp;<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Sight loss management<\/strong>&nbsp;<\/h3>\n\n\n\n<p>Management of sight loss in people with Usher syndrome includes:&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li>Correcting any refractive errors.&nbsp;<\/li>\n\n\n\n<li>Referral to low vision services.&nbsp;<\/li>\n\n\n\n<li>Monitoring for associated complications such as cataracts and cystoid macular oedema.&nbsp;<\/li>\n\n\n\n<li>A healthy, balanced diet that includes fresh fruit and green leafy vegetables.&nbsp;<\/li>\n\n\n\n<li><strong><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/technology-mobility-aids-and-devices\/\">Vision aids<\/a><\/strong> and <strong><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/communication\/assistive-technology\/\">assistive technology<\/a><\/strong>\u202fto improve quality of life.&nbsp;&nbsp;<\/li>\n\n\n\n<li>UV-protected sunglasses.&nbsp;<\/li>\n\n\n\n<li><strong><a href=\"#resources\">Blue-light screen protectors<\/a><\/strong> on mobile devices and computer screens, as a precaution. &nbsp;<\/li>\n<\/ul>\n\n<\/div>\n  <\/div>\n<\/div>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"dual-sensory\"><strong>Dual sensory clinics<\/strong><\/h2>\n\n\n\n<p>Dual sensory clinics are established in some centres to improve the clinical experience of children with hearing and sight impairment.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Patients can access a multidisciplinary clinic in one visit, reducing the stress of multiple medical appointments.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Dual sensory clinics will promote faster and more accurate diagnosis through extensive genetic testing and detection of visual symptoms at an earlier stage.&nbsp;<\/p>\n\n\n\n<p>You can <a href=\"#resources\">visit our resources<\/a> to learn more about Usher syndrome diagnosis, genetic testing, genetics and phenotypes, management, key clinical investigations, gene therapies and research.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"deafblind-guidance\"><strong>Deafblind guidance for local authorities<\/strong>&nbsp;<\/h2>\n\n\n\n<p>People with a combined sight and hearing impairment are entitled to a local authority assessment (England and Wales) under the Department of Health\u2019s <strong><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/life-stages\/deafblind-guidance\/\">deafblind guidance<\/a><\/strong>.&nbsp;<\/p>\n\n\n\n<p>The assessment may lead to them getting some or all of the following:&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li>Orientation and mobility\u202ftraining.\u202f&nbsp;<\/li>\n\n\n\n<li>Help to learn\u202fnew communication methods, such as <strong><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/communication\/sign-language\/\">British Sign Language (BSL)<\/a>.<\/strong>&nbsp;<\/li>\n\n\n\n<li>One-to-one support, for example a <strong><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/communication\/communication-support\/\">communicator guide<\/a><\/strong>, who can help you with everyday tasks, to get around and maintain your independence.&nbsp;&nbsp;<\/li>\n\n\n\n<li><strong><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/technology\/assistive-technology-for-people-with-hearing-loss\/\">Hearing aids<\/a><\/strong> and <strong><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/technology-mobility-aids-and-devices\/\">vision aids<\/a><\/strong>.\u00a0<\/li>\n\n\n\n<li>Other <strong><a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/technology\/\">assistive technology<\/a><\/strong>.\u00a0<\/li>\n<\/ul>\n\n\n\n<p>Under this guidance, under Section 7 of the Local Authority Social Services Act 1970 (for children) and section 78 of the Care Act 2014 (for adults), local authorities must:&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li>Make contact with and keep a record of all deafblind people.&nbsp;<\/li>\n\n\n\n<li>Ensure assessments of need for care and support are carried out by people with specific training and expertise.&nbsp;<\/li>\n\n\n\n<li>Provide appropriate services for deafblind people.&nbsp;<\/li>\n\n\n\n<li>Provide specially trained one-to-one support workers when necessary.&nbsp;<\/li>\n\n\n\n<li>Provide accessible information for deafblind people.&nbsp;<\/li>\n\n\n\n<li>Ensure that a director-level member of the local authority senior team has overall responsibility for deafblind services.&nbsp;<\/li>\n<\/ul>\n\n\n\n<p>Download the full guide,<strong> <a href=\"#resources\">care and support for deafblind children and adults policy guidance<\/a><\/strong>.&nbsp;<\/p>\n\n\n\n<div class=\"wp-block  slab    is-style-textured-grey-tint-10  align-full\">\n  <div class=\"wrap\">  <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\" id=\"resources\"><strong>Resources<\/strong>&nbsp;<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>1. Government resources<\/strong>&nbsp;<\/h3>\n\n\n\n<h4 class=\"wp-block-heading\"><strong>ClinicalTrials.gov (US)<\/strong>&nbsp;<\/h4>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li><a href=\"https:\/\/www.clinicaltrials.gov\/\" target=\"_blank\" rel=\"noreferrer noopener\">Explore 404,530 research studies in all 50 states and in 220 countries<\/a>.&nbsp;<\/li>\n\n\n\n<li><a href=\"https:\/\/clinicaltrials.gov\/ct2\/show\/NCT01505062\" target=\"_blank\" rel=\"noreferrer noopener\">Study of SAR421869 in Participants With Retinitis Pigmentosa Associated With Usher Syndrome Type 1B.<\/a>&nbsp;<\/li>\n\n\n\n<li><a href=\"https:\/\/clinicaltrials.gov\/ct2\/show\/NCT03780257\" target=\"_blank\" rel=\"noreferrer noopener\">Study to Evaluate Safety and Tolerability of QR-421a in Subjects With RP Due to Mutations in Exon 13 of the USH2A Gene (Stellar)<\/a>.&nbsp;<\/li>\n\n\n\n<li><a href=\"https:\/\/clinicaltrials.gov\/ct2\/show\/NCT02065011\" target=\"_blank\" rel=\"noreferrer noopener\">A Study to Determine the Long-Term Safety, Tolerability and Biological Activity of SAR421869 in Patients With Usher Syndrome Type 1B<\/a>.&nbsp;<\/li>\n<\/ul>\n\n\n\n<h4 class=\"wp-block-heading\"><strong>GOV.UK<\/strong>&nbsp;<\/h4>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li><a href=\"https:\/\/www.gov.uk\/government\/publications\/deafblind-people-guidance-for-local-authorities\" target=\"_blank\" rel=\"noreferrer noopener\">Care and support for deafblind children and adults policy guidance<\/a>.&nbsp;<\/li>\n<\/ul>\n\n\n\n<h4 class=\"wp-block-heading\"><strong>National Library of Medicine (US)<\/strong>&nbsp;<\/h4>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li><a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/29044670\/\" target=\"_blank\" rel=\"noreferrer noopener\">The effect of blue-light blocking spectacle lenses on visual performance, macular health and the sleep-wake cycle: a systematic review of the literature<\/a>.&nbsp;<\/li>\n<\/ul>\n\n\n\n<h4 class=\"wp-block-heading\"><strong>National Eye Institute (US)<\/strong>&nbsp;<\/h4>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li><a href=\"https:\/\/www.nei.nih.gov\/about\/news-and-events\/news?topic=57&amp;initiatives=All&amp;research=All&amp;source=All&amp;created=All&amp;language=All\" target=\"_blank\" rel=\"noreferrer noopener\">NEI Research News (new information about the causes and treatments of vision disorder, including retinitis pigmentosa)<\/a>.&nbsp;<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>2. Other resources<\/strong>&nbsp;<\/h3>\n\n\n\n<h4 class=\"wp-block-heading\"><strong>BMJ<\/strong><\/h4>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li><a href=\"https:\/\/bmjopen.bmj.com\/content\/7\/1\/e013261\" target=\"_blank\" rel=\"noreferrer noopener\">Ophthalmology Research: Psychosocial well-being and health-related quality of life in a UK population with Usher syndrome<\/a>.&nbsp;<\/li>\n<\/ul>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"gene-vision\"><strong>Gene Vision<\/strong>&nbsp;<\/h4>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li><a href=\"https:\/\/gene.vision\/knowledge-base\/usher-syndrome-for-professionals\/\" target=\"_blank\" rel=\"noreferrer noopener\">Usher syndrome: for professionals<\/a>.&nbsp;<\/li>\n\n\n\n<li><a href=\"https:\/\/gene.vision\/knowledge-base\/clinical-genetic-testing-for-doctors\/#NGS\" target=\"_blank\" rel=\"noreferrer noopener\">Clinical genetic testing: for professionals (including next generation sequencing)<\/a>.&nbsp;<\/li>\n\n\n\n<li><a href=\"https:\/\/gene.vision\/genetic-basics-inheritance-pattern\/#DNA\" target=\"_blank\" rel=\"noreferrer noopener\">Genetics basics and inheritance pattern<\/a>.&nbsp;<\/li>\n\n\n\n<li><a href=\"https:\/\/gene.vision\/knowledge-base\/gene-therapy\/\" target=\"_blank\" rel=\"noreferrer noopener\">Gene therapy<\/a>.&nbsp;<\/li>\n\n\n\n<li><a href=\"https:\/\/gene.vision\/knowledge-base\/nonsense-suppression-therapy\/\" target=\"_blank\" rel=\"noreferrer noopener\">Nonsense suppression therapy<\/a>.&nbsp;<\/li>\n\n\n\n<li><a href=\"https:\/\/gene.vision\/knowledge-base\/gene-editing\/\" target=\"_blank\" rel=\"noreferrer noopener\">Gene editing<\/a>.&nbsp;<\/li>\n\n\n\n<li><a href=\"https:\/\/gene.vision\/knowledge-base\/rna-therapy\/\" target=\"_blank\" rel=\"noreferrer noopener\">RNA therapy<\/a>.&nbsp;<\/li>\n\n\n\n<li><a href=\"https:\/\/gene.vision\/retina\/#photoreceptors\" target=\"_blank\" rel=\"noreferrer noopener\">Retina<\/a>.&nbsp;<\/li>\n\n\n\n<li><a href=\"https:\/\/gene.vision\/lens\/#cataract\" target=\"_blank\" rel=\"noreferrer noopener\">Lens<\/a>.&nbsp;<\/li>\n<\/ul>\n\n\n\n<h4 class=\"wp-block-heading\"><strong>Great Ormond St dual sensory clinic<\/strong>&nbsp;<\/h4>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li><a href=\"https:\/\/www.gosh.nhs.uk\/wards-and-departments\/departments\/about-dual-sensory-clinic\/\" target=\"_blank\" rel=\"noreferrer noopener\">About the dual sensory clinic<\/a>.&nbsp;<\/li>\n<\/ul>\n\n\n\n<h4 class=\"wp-block-heading\"><strong>Medline Plus (US)<\/strong>&nbsp;<\/h4>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li><a href=\"https:\/\/medlineplus.gov\/genetics\/gene\/myo7a\/\" target=\"_blank\" rel=\"noreferrer noopener\">MYO7A gene<\/a>.&nbsp;<\/li>\n\n\n\n<li><a href=\"https:\/\/medlineplus.gov\/genetics\/gene\/ush2a\/\" target=\"_blank\" rel=\"noreferrer noopener\">USH2A gene<\/a>.&nbsp;<\/li>\n<\/ul>\n\n\n\n<h4 class=\"wp-block-heading\"><strong>ProQR<\/strong><\/h4>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li><a href=\"https:\/\/www.proqr.com\/files\/2020-08\/ProQR-Patient-Community-update-QR-421a-interim-three-month-analysis-March-2020.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">Interim Findings of QR-421a Phase 1\/2 Clinical Trial for Usher Syndrome and nsRP (March 2020)<\/a>.&nbsp;<\/li>\n<\/ul>\n\n\n\n<h4 class=\"wp-block-heading\"><strong>Retina UK<\/strong>&nbsp;<\/h4>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li><a href=\"https:\/\/retinauk.org.uk\/research-news\/\" target=\"_blank\" rel=\"noreferrer noopener\">Research news<\/a>.&nbsp;<\/li>\n\n\n\n<li><a href=\"https:\/\/retinauk.org.uk\/wp-content\/uploads\/2019\/03\/Usher-syndrome-project-year-one-report-March-19.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">An investigation into non-viral gene therapy using S\/MAR vectors for Usher syndrome First year report (published March 2019)<\/a>.&nbsp;&nbsp;<\/li>\n\n\n\n<li><a href=\"https:\/\/retinauk.org.uk\/wp-content\/uploads\/2020\/04\/Usher-syndrome-year-two-report-March-20.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">An investigation into non-viral gene therapy using S\/MAR vectors for Usher syndrome. Summary of second year report (published March 2020)<\/a>.&nbsp;&nbsp;<\/li>\n<\/ul>\n\n\n\n<h4 class=\"wp-block-heading\"><strong>University of Birmingham<\/strong>&nbsp;<\/h4>\n\n\n\n<ul class=\"wp-block-list is-style-secondary-bullets\">\n<li><a href=\"https:\/\/www.birmingham.ac.uk\/research\/victar\/research\/usher-syndrome.aspx\" target=\"_blank\" rel=\"noreferrer noopener\">The experiences of diagnosis for people with Usher syndrome<strong>, <\/strong>with links to download<strong> <\/strong>the full final report and summary in Word format<\/a>.&nbsp;<\/li>\n\n\n\n<li><a href=\"https:\/\/www.birmingham.ac.uk\/Documents\/college-social-sciences\/education\/projects\/final-report-on-life-and-change-with-usher.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">The experience of diagnosis for people with Usher syndrome (PDF download).<\/a>&nbsp;<\/li>\n<\/ul>\n\n<\/div>\n  <\/div>\n<\/div>\n\n\n\n<h2 class=\"wp-block-heading\">Get in touch<\/h2>\n\n\n\n<p>If you would like to find out more about the services we provide, please get in touch with us at <a href=\"mailto:info@sense.org.uk\">info@sense.org.uk<\/a> or visit our <a href=\"https:\/\/www.sense.org.uk\/contact-us\/\">get in touch<\/a> page for other ways to contact us.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>An overview of Usher syndrome for heatlhcare professionals. <\/p>\n","protected":false},"author":16,"featured_media":0,"parent":2826,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"content_label":[],"class_list":["post-3059","page","type-page","status-publish","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/pages\/3059","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/users\/16"}],"replies":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/comments?post=3059"}],"version-history":[{"count":0,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/pages\/3059\/revisions"}],"up":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/pages\/2826"}],"wp:attachment":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media?parent=3059"}],"wp:term":[{"taxonomy":"content_label","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/content_label?post=3059"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}