{"id":698,"date":"2025-09-04T15:21:23","date_gmt":"2025-09-04T15:21:23","guid":{"rendered":"https:\/\/www.curedm.co.uk\/?page_id=698"},"modified":"2026-04-05T14:34:06","modified_gmt":"2026-04-05T14:34:06","slug":"ongoing-curedm-community-survey","status":"publish","type":"page","link":"https:\/\/www.curedm.co.uk\/?page_id=698","title":{"rendered":"CureDM Community Research"},"content":{"rendered":"\n<ul class=\"wp-block-list\">\n<li><a href=\"https:\/\/www.surveymonkey.com\/r\/2026-CureDM-Community\" target=\"_blank\" rel=\"noreferrer noopener\"><strong><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-custom-colour-1-color\"><span style=\"text-decoration: underline;\">Patient reported experiences in Myotonic Dystrophy &#8211; 2026<\/span><\/mark><\/strong><\/a><\/li>\n<\/ul>\n\n\n\n<p>The surveys above will help us to better understand the community that we support, and to assist in making that support more effective, particularly within clinics and amongst the medical professionals.<\/p>\n\n\n\n<p>Results are gathered and presented at multiple worldwide conferences to raise awareness for the UK community, whilst supporting clinicians, researchers and of course the Charity.<\/p>\n\n\n\n<p>All CureDM surveys are anonymous and therefore <strong>not traceable<\/strong> to any responder. All published findings are shared below, and can be used to help support the DM community where necessary.<\/p>\n\n\n\n<p>The surverys above are ongoing, with data being interpreted and presented at conferences and events, to give an up to date snapshot of the UK DM community.<\/p>\n\n\n\n<p>This is a CureDM Charity survey. We hope the results will inspire and support current and ongoing research, raising the voice of our UK Community and including those who may not be able to take part in current trials. <\/p>\n\n\n\n<p><\/p>\n\n\n\n<p><\/p>\n\n\n\n<h2 class=\"wp-block-heading has-text-align-center\"><strong><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-custom-colour-1-color\"><span style=\"text-decoration: underline;\">Reports from previous CureDM Surveys and links to posters:<\/span><\/mark><\/strong><\/h2>\n\n\n\n<p><strong>August 2025:<\/strong> <span style=\"text-decoration: underline;\">Patient reported illnesses and hospital admissions for Congenital and Childhood onset Myotonic Dystrophy Type 1 over a 12month period.<\/span><\/p>\n\n\n\n<div data-wp-interactive=\"core\/file\" class=\"wp-block-file\"><object data-wp-bind--hidden=\"!state.hasPdfPreview\" hidden class=\"wp-block-file__embed\" data=\"https:\/\/www.curedm.co.uk\/wp-content\/uploads\/2026\/04\/CDM-ChDM-illnesses-and-hospitalisations-over-a-12month-period.pdf\" type=\"application\/pdf\" style=\"width:100%;height:240px\" aria-label=\"Embed of CDM-ChDM illnesses and hospitalisations over a 12month period.\"><\/object><a id=\"wp-block-file--media-90fae55d-dfce-40ee-bb87-1ae4262482f2\" href=\"https:\/\/www.curedm.co.uk\/wp-content\/uploads\/2026\/04\/CDM-ChDM-illnesses-and-hospitalisations-over-a-12month-period.pdf\">CDM-ChDM illnesses and hospitalisations over a 12month period<\/a><a href=\"https:\/\/www.curedm.co.uk\/wp-content\/uploads\/2026\/04\/CDM-ChDM-illnesses-and-hospitalisations-over-a-12month-period.pdf\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-90fae55d-dfce-40ee-bb87-1ae4262482f2\">Download<\/a><\/div>\n\n\n\n<details class=\"wp-block-details is-layout-flow wp-block-details-is-layout-flow\"><summary>Click to view\/ download.<\/summary>\n<div class=\"wp-block-group has-global-padding is-layout-constrained wp-block-group-is-layout-constrained\">\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:100%\">\n<div data-wp-interactive=\"core\/file\" class=\"wp-block-file\"><object data-wp-bind--hidden=\"!state.hasPdfPreview\" hidden class=\"wp-block-file__embed\" data=\"https:\/\/www.curedm.co.uk\/wp-content\/uploads\/2025\/09\/CDM-ChDM-illnesses-and-hospitalisations-over-a-12month-period.pdf\" type=\"application\/pdf\" style=\"width:100%;height:600px\" aria-label=\"Embed of CDM-ChDM illnesses and hospitalisations over a 12month period.\"><\/object><a id=\"wp-block-file--media-ae1dbd18-4412-4978-930d-d34865750161\" href=\"https:\/\/www.curedm.co.uk\/wp-content\/uploads\/2025\/09\/CDM-ChDM-illnesses-and-hospitalisations-over-a-12month-period.pdf\">CDM-ChDM illnesses and hospitalisations over a 12month period<\/a><a href=\"https:\/\/www.curedm.co.uk\/wp-content\/uploads\/2025\/09\/CDM-ChDM-illnesses-and-hospitalisations-over-a-12month-period.pdf\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-ae1dbd18-4412-4978-930d-d34865750161\">Download<\/a><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/details>\n\n\n\n<p><br><\/p>\n\n\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>The surveys above will help us to better understand the community that we support, and to assist in making that support more effective, particularly within clinics and amongst the medical professionals. Results are gathered and presented at multiple worldwide conferences to raise awareness for the UK community, whilst supporting clinicians, researchers and of course the [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":710,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-698","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.curedm.co.uk\/index.php?rest_route=\/wp\/v2\/pages\/698","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.curedm.co.uk\/index.php?rest_route=\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.curedm.co.uk\/index.php?rest_route=\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.curedm.co.uk\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.curedm.co.uk\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=698"}],"version-history":[{"count":7,"href":"https:\/\/www.curedm.co.uk\/index.php?rest_route=\/wp\/v2\/pages\/698\/revisions"}],"predecessor-version":[{"id":1243,"href":"https:\/\/www.curedm.co.uk\/index.php?rest_route=\/wp\/v2\/pages\/698\/revisions\/1243"}],"up":[{"embeddable":true,"href":"https:\/\/www.curedm.co.uk\/index.php?rest_route=\/wp\/v2\/pages\/710"}],"wp:attachment":[{"href":"https:\/\/www.curedm.co.uk\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=698"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}