{"id":13366,"date":"2022-05-02T15:55:09","date_gmt":"2022-05-02T15:55:09","guid":{"rendered":"https:\/\/laforcedmd.com\/take-action-subscribe-to-registries\/"},"modified":"2022-10-27T18:51:43","modified_gmt":"2022-10-27T18:51:43","slug":"take-action-subscribe-to-registries","status":"publish","type":"page","link":"https:\/\/laforcedmd.com\/en\/take-action-subscribe-to-registries\/","title":{"rendered":"Take action – Subscribe to registries"},"content":{"rendered":"
[mk_page_section vertical_align=”center” bg_image=”https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/img-la-force-dmd-63-1.jpg” bg_position=”center center” bg_repeat=”no-repeat” bg_stretch=”true” enable_3d=”true” min_height=”250″ full_height=”true” el_class=”section-header header-02″ sidebar=”sidebar-1″][vc_column][vc_column_text disable_pattern=”false” align=”center” css=”.vc_custom_1651774544660{margin-bottom: 0px !important;}”]\n

Subscribe<\/span>
\nto registries<\/span><\/h1>\n[\/vc_column_text][\/vc_column][\/mk_page_section][vc_row][vc_column][mk_padding_divider size=”50″ visibility=”visible-sm”][mk_padding_divider size=”50″ visibility=”visible-tl”][vc_column_text disable_pattern=”false” align=”center” el_class=”contenu-inner-padding” css=”.vc_custom_1654090970595{margin-bottom: 0px !important;}”]\n

Registries connect researchers and people with dmd and enable faster communication and recruitment for clinical trials.<\/p>\n[\/vc_column_text][mk_padding_divider size=”50″][\/vc_column][\/vc_row][mk_page_section vertical_align=”center” bg_image=”https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/img-la-force-dmd-51.jpg” bg_position=”center center” bg_repeat=”no-repeat” bg_stretch=”true” enable_3d=”true” min_height=”250″ full_height=”true” el_class=”section-header header-02″ sidebar=”sidebar-1″][vc_column][\/vc_column][\/mk_page_section][vc_row fullwidth=”true” css=”.vc_custom_1650899369675{padding-right: 0px !important;padding-left: 0px !important;}”][vc_column css=”.vc_custom_1650899375035{padding-right: 0px !important;padding-left: 0px !important;}”][vc_accordions style=”simple-style” open_toggle=”-1″ container_bg_color=”” responsive=”false” scroll_click=”true” el_class=”liste-accordion liste-registre remove-first-border accordion-hide-title”][vc_accordion_tab title=”
\n<h2>What You Need to Know about Registries<\/h2>
\n“][vc_row_inner el_class=”border-section”][vc_column_inner el_class=”bg-height-01″ width=”1\/2″ css=”.vc_custom_1654804070834{padding-right: 0px !important;padding-left: 0px !important;background-image: url(https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/img-la-force-dmd-52.jpg?id=11760) !important;background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}”][\/vc_column_inner][vc_column_inner width=”1\/2″][vc_column_text disable_pattern=”false” el_class=”contenu-inner-padding” css=”.vc_custom_1654194478427{margin-bottom: 0px !important;}”]\n

What You Need to Know about Registries<\/span><\/h2>\n

Many questions about neuromuscular diseases remain unanswered. Scientific advances in recent years have improved treatment but not managed to cure these diseases. New therapies are emerging, and clinical studies and research plans calling for patient participation are currently in development.<\/p>\n

When medical researchers plan a clinical trial, they must find good subjects and contact them quickly. Often, not enough people with neuromuscular diseases live nearby a specific centre to enable researchers there to conduct a trial. Finding subjects nearby may help clinical trials to begin sooner.<\/p>\n

That\u2019s where registries come in. Registries connect researchers and people with dmd and enable faster communication and recruitment for clinical trials.[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_accordion_tab][vc_accordion_tab title=”
\n<h2>Canadian Neuromuscular Disease Registry (CNDR)<\/h2>
\n“][vc_row_inner el_class=”border-section”][vc_column_inner el_class=”bg-height-01″ width=”1\/2″ css=”.vc_custom_1655153422972{padding-right: 0px !important;padding-left: 0px !important;background-image: url(https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/img-la-force-dmd-40-1.jpg?id=11865) !important;background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}”][\/vc_column_inner][vc_column_inner width=”1\/2″][vc_column_text disable_pattern=”false” el_class=”contenu-apropos-padding” css=”.vc_custom_1654541197139{margin-bottom: 0px !important;}”]\n

Canadian Neuromuscular Disease Registry (CNDR)<\/span><\/h2>\n

Led by the University of Calgary, the Canadian Neuromuscular Disease Registry (CNDR) is a Canada-wide registry of people diagnosed with a neuromuscular disease. It collects important medical information from Canadians with neuromuscular diseases to better our understanding of these disorders and speed the development of new therapies. The four-year-old registry has recruited 2,000 patients from across Canada.<\/p>\n

Learn more<\/p>\n

<\/a><\/div>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_accordion_tab][vc_accordion_tab title=”
\n<h2>TREAT-NMD<\/h2>
\n“][vc_row_inner][vc_column_inner el_class=”bg-height-01″ width=”1\/2″ css=”.vc_custom_1655148330932{padding-right: 0px !important;padding-left: 0px !important;background-image: url(https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/img-la-force-dmd-62.jpg?id=11797) !important;background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}”][\/vc_column_inner][vc_column_inner width=”1\/2″][vc_column_text disable_pattern=”false” el_class=”contenu-inner-padding” css=”.vc_custom_1654194488575{margin-bottom: 0px !important;}”]\n

TREAT-NMD<\/span><\/h2>\n

TREAT-NMD<\/a> maintains a European registry. Its database is located in Marseille, France. TREAT-NMD receives coded medical information from registries around the world, including the CNDR.<\/p>\n

If you give your consent, the CNDR will send a copy of your medical record to the TREAT-NMD database. It will be beneficial to researchers worldwide. TREAT-NMD will never have access to your name or other personal information. A secret number will be assigned to your medical information. You can still participate in the CNDR if you do not want to share your medical information with TREAT-NMD.[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_accordion_tab][vc_accordion_tab title=”
\n<h2>Who will inform me about research opportunities and clinical trials?<\/h2>
\n“][vc_row_inner][vc_column_inner el_class=”bg-height-02″ width=”1\/2″ css=”.vc_custom_1655153558805{padding-right: 0px !important;padding-left: 0px !important;background-image: url(https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/img-la-force-dmd-60-2.jpg?id=11868) !important;background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}”][\/vc_column_inner][vc_column_inner width=”1\/2″][vc_column_text disable_pattern=”false” el_class=”contenu-inner-padding” css=”.vc_custom_1654194493267{margin-bottom: 0px !important;}”]\n

Who will inform me about research opportunities and clinical trials?<\/span><\/h2>\n

If you\u2019re a potential candidate for a research study, the CNDR will send you a letter. It will contain information about the study, and it will give you the name of the person to contact if you want to participate.<\/p>\n

The CNDR will never give out your name or personal information. If you wish to participate in a clinical trial, you must contact the researcher. He or she will give you all of the information that you need to decide whether or not to join the study.<\/p>\n

If you agree to take part, you will need to read and sign a consent form, provided by the research team. You are free to choose or not choose to participate in any study that the CNDR brings to your attention. If you decide not to participate, the CNDR will still keep your name in the registry. You will continue to receive information on other studies unless you advise the CNDR otherwise. The fact that the CNDR is contacting you about a study does not necessarily mean that it supports it. It\u2019s up to you to do your homework![\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_accordion_tab][\/vc_accordions][\/vc_column][\/vc_row]\n<\/div>","protected":false},"excerpt":{"rendered":"

[mk_page_section vertical_align=”center” bg_image=”https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/img-la-force-dmd-63-1.jpg” bg_position=”center center” bg_repeat=”no-repeat” bg_stretch=”true” enable_3d=”true” min_height=”250″ full_height=”true” el_class=”section-header header-02″ sidebar=”sidebar-1″][vc_column][vc_column_text disable_pattern=”false” align=”center” css=”.vc_custom_1651774544660{margin-bottom: 0px !important;}”] Subscribe to registries [\/vc_column_text][\/vc_column][\/mk_page_section][vc_row][vc_column][mk_padding_divider size=”50″ visibility=”visible-sm”][mk_padding_divider size=”50″ visibility=”visible-tl”][vc_column_text disable_pattern=”false” align=”center” el_class=”contenu-inner-padding” css=”.vc_custom_1654090970595{margin-bottom: 0px !important;}”] Registries connect researchers and people with dmd and enable faster communication and recruitment for clinical trials. [\/vc_column_text][mk_padding_divider size=”50″][\/vc_column][\/vc_row][mk_page_section vertical_align=”center” bg_image=”https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/img-la-force-dmd-51.jpg” bg_position=”center center” bg_repeat=”no-repeat” […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-13366","page","type-page","status-publish","hentry"],"yoast_head":"\nLa Force | Subscribe to registries<\/title>\n<meta name=\"description\" content=\"Registries connect researchers and people with dmd and enable faster communication and recruitment for clinical trials.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/laforcedmd.com\/en\/take-action-subscribe-to-registries\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"La Force | Subscribe to registries\" \/>\n<meta property=\"og:description\" content=\"Registries connect researchers and people with dmd and enable faster communication and recruitment for clinical trials.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/laforcedmd.com\/en\/take-action-subscribe-to-registries\/\" \/>\n<meta property=\"og:site_name\" content=\"La Force dmd\" \/>\n<meta property=\"article:modified_time\" content=\"2022-10-27T18:51:43+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"5 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/laforcedmd.com\\\/en\\\/take-action-subscribe-to-registries\\\/\",\"url\":\"https:\\\/\\\/laforcedmd.com\\\/en\\\/take-action-subscribe-to-registries\\\/\",\"name\":\"La Force | Subscribe to registries\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/laforcedmd.com\\\/#website\"},\"datePublished\":\"2022-05-02T15:55:09+00:00\",\"dateModified\":\"2022-10-27T18:51:43+00:00\",\"description\":\"Registries connect researchers and people with dmd and enable faster communication and recruitment for clinical trials.\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/laforcedmd.com\\\/en\\\/take-action-subscribe-to-registries\\\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/laforcedmd.com\\\/en\\\/take-action-subscribe-to-registries\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/laforcedmd.com\\\/en\\\/take-action-subscribe-to-registries\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Accueil\",\"item\":\"https:\\\/\\\/laforcedmd.com\\\/en\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Take action – Subscribe to registries\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/laforcedmd.com\\\/#website\",\"url\":\"https:\\\/\\\/laforcedmd.com\\\/\",\"name\":\"La Force dmd\",\"description\":\"Dystrophie musculaire de Duchenne\",\"publisher\":{\"@id\":\"https:\\\/\\\/laforcedmd.com\\\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/laforcedmd.com\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"en-US\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/laforcedmd.com\\\/#organization\",\"name\":\"La Force dmd\",\"url\":\"https:\\\/\\\/laforcedmd.com\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\\\/\\\/laforcedmd.com\\\/#\\\/schema\\\/logo\\\/image\\\/\",\"url\":\"https:\\\/\\\/laforcedmd.com\\\/wp-content\\\/uploads\\\/2022\\\/06\\\/logo-la-force-dmd.jpg\",\"contentUrl\":\"https:\\\/\\\/laforcedmd.com\\\/wp-content\\\/uploads\\\/2022\\\/06\\\/logo-la-force-dmd.jpg\",\"width\":500,\"height\":125,\"caption\":\"La Force dmd\"},\"image\":{\"@id\":\"https:\\\/\\\/laforcedmd.com\\\/#\\\/schema\\\/logo\\\/image\\\/\"}}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"La Force | Subscribe to registries","description":"Registries connect researchers and people with dmd and enable faster communication and recruitment for clinical trials.","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/laforcedmd.com\/en\/take-action-subscribe-to-registries\/","og_locale":"en_US","og_type":"article","og_title":"La Force | Subscribe to registries","og_description":"Registries connect researchers and people with dmd and enable faster communication and recruitment for clinical trials.","og_url":"https:\/\/laforcedmd.com\/en\/take-action-subscribe-to-registries\/","og_site_name":"La Force dmd","article_modified_time":"2022-10-27T18:51:43+00:00","twitter_card":"summary_large_image","twitter_misc":{"Est. reading time":"5 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/laforcedmd.com\/en\/take-action-subscribe-to-registries\/","url":"https:\/\/laforcedmd.com\/en\/take-action-subscribe-to-registries\/","name":"La Force | Subscribe to registries","isPartOf":{"@id":"https:\/\/laforcedmd.com\/#website"},"datePublished":"2022-05-02T15:55:09+00:00","dateModified":"2022-10-27T18:51:43+00:00","description":"Registries connect researchers and people with dmd and enable faster communication and recruitment for clinical trials.","breadcrumb":{"@id":"https:\/\/laforcedmd.com\/en\/take-action-subscribe-to-registries\/#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/laforcedmd.com\/en\/take-action-subscribe-to-registries\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/laforcedmd.com\/en\/take-action-subscribe-to-registries\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Accueil","item":"https:\/\/laforcedmd.com\/en\/"},{"@type":"ListItem","position":2,"name":"Take action – Subscribe to registries"}]},{"@type":"WebSite","@id":"https:\/\/laforcedmd.com\/#website","url":"https:\/\/laforcedmd.com\/","name":"La Force dmd","description":"Dystrophie musculaire de Duchenne","publisher":{"@id":"https:\/\/laforcedmd.com\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/laforcedmd.com\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"en-US"},{"@type":"Organization","@id":"https:\/\/laforcedmd.com\/#organization","name":"La Force dmd","url":"https:\/\/laforcedmd.com\/","logo":{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/laforcedmd.com\/#\/schema\/logo\/image\/","url":"https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/logo-la-force-dmd.jpg","contentUrl":"https:\/\/laforcedmd.com\/wp-content\/uploads\/2022\/06\/logo-la-force-dmd.jpg","width":500,"height":125,"caption":"La Force dmd"},"image":{"@id":"https:\/\/laforcedmd.com\/#\/schema\/logo\/image\/"}}]}},"_links":{"self":[{"href":"https:\/\/laforcedmd.com\/en\/wp-json\/wp\/v2\/pages\/13366","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/laforcedmd.com\/en\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/laforcedmd.com\/en\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/laforcedmd.com\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/laforcedmd.com\/en\/wp-json\/wp\/v2\/comments?post=13366"}],"version-history":[{"count":2,"href":"https:\/\/laforcedmd.com\/en\/wp-json\/wp\/v2\/pages\/13366\/revisions"}],"predecessor-version":[{"id":13368,"href":"https:\/\/laforcedmd.com\/en\/wp-json\/wp\/v2\/pages\/13366\/revisions\/13368"}],"wp:attachment":[{"href":"https:\/\/laforcedmd.com\/en\/wp-json\/wp\/v2\/media?parent=13366"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}