{"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":"2026-05-28T07:03:53","modified_gmt":"2026-05-28T07:03:53","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 class=\"has-large-font-size\"><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 class=\"wp-block-paragraph\">The surveys above are currently open for responses, and 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 class=\"wp-block-paragraph\">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 class=\"wp-block-paragraph\">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 class=\"wp-block-paragraph\">Data are 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 class=\"wp-block-paragraph\">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 class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/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 class=\"wp-block-paragraph\"><strong>May 2026:<\/strong> <span style=\"text-decoration: underline;\">Patient-Reported Experiences and Preferences Regarding Palliative and End-of-Life Care in Myotonic Dystrophy: A UK Community Survey<\/span><\/p>\n\n\n\n<div class=\"wp-block-media-text has-media-on-the-right is-stacked-on-mobile is-vertically-aligned-center\" style=\"grid-template-columns:auto 49%\"><div class=\"wp-block-media-text__content\">\n<p class=\"wp-block-paragraph\">Poster presented at IDMC-15, in 2026.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Click image for PDF<\/p>\n<\/div><figure class=\"wp-block-media-text__media\"><a href=\"https:\/\/www.curedm.co.uk\/wp-content\/uploads\/2026\/05\/IDMC-15-poster.pdf\" target=\"_blank\" rel=\" noreferrer noopener\"><img loading=\"lazy\" decoding=\"async\" width=\"724\" height=\"1024\" src=\"http:\/\/www.curedm.co.uk\/wp-content\/uploads\/2026\/05\/IDMC-15-poster-page-small-1-724x1024.jpg\" alt=\"\" class=\"wp-image-1390 size-full\" srcset=\"https:\/\/www.curedm.co.uk\/wp-content\/uploads\/2026\/05\/IDMC-15-poster-page-small-1-724x1024.jpg 724w, https:\/\/www.curedm.co.uk\/wp-content\/uploads\/2026\/05\/IDMC-15-poster-page-small-1-212x300.jpg 212w, https:\/\/www.curedm.co.uk\/wp-content\/uploads\/2026\/05\/IDMC-15-poster-page-small-1-768x1086.jpg 768w, https:\/\/www.curedm.co.uk\/wp-content\/uploads\/2026\/05\/IDMC-15-poster-page-small-1-1087x1536.jpg 1087w, https:\/\/www.curedm.co.uk\/wp-content\/uploads\/2026\/05\/IDMC-15-poster-page-small-1-1449x2048.jpg 1449w, https:\/\/www.curedm.co.uk\/wp-content\/uploads\/2026\/05\/IDMC-15-poster-page-small-1-scaled.jpg 1811w\" sizes=\"auto, (max-width: 724px) 100vw, 724px\" \/><\/a><\/figure><\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><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:200px\" 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-3a88641f 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 class=\"wp-block-paragraph\"><br><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n","protected":false},"excerpt":{"rendered":"<p>The surveys above are currently open for responses, and 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 [&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":13,"href":"https:\/\/www.curedm.co.uk\/index.php?rest_route=\/wp\/v2\/pages\/698\/revisions"}],"predecessor-version":[{"id":1397,"href":"https:\/\/www.curedm.co.uk\/index.php?rest_route=\/wp\/v2\/pages\/698\/revisions\/1397"}],"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}]}}