{"id":137,"date":"2019-12-31T19:28:29","date_gmt":"2019-12-31T19:28:29","guid":{"rendered":"http:\/\/lgmd1d.org\/lgmdwp\/?page_id=137"},"modified":"2022-03-10T12:52:23","modified_gmt":"2022-03-10T20:52:23","slug":"lgmd1-and-autosomal-dominant-muscular-dystrophy-international-registry","status":"publish","type":"page","link":"https:\/\/lgmd1d.org\/lgmdwp\/lgmd1-and-autosomal-dominant-muscular-dystrophy-international-registry\/","title":{"rendered":"International Registry for All Autosomal Dominant Muscular Dystrophies, (eg. LGMD1A-H, MFM )"},"content":{"rendered":"\r\n<h2 style=\"text-align: center;\"><span style=\"color: #ff0000;\"><strong>See <a href=\"https:\/\/neuromuscular.wustl.edu\/musdist\/lg.html\">HERE<\/a> for a complete list of myopathies.<\/strong><\/span><\/h2>\r\n<p>&nbsp;<\/p>\r\n<p>Our Privacy Policy:\u200b\u200b<\/p>\r\n\r\n\r\n\r\n<pre class=\"wp-block-code\"><code>                                   The LGMD-1D DNAJB6 Foundation does not share personal information.  We do not track or profile you.  The Foundation is strongly committed to protecting the privacy of its user community and is dedicated to ensure that your information cannot be be linked back to you.  Your participation in this registry will be kept confidential and your contact with outside researchers and orginizations interested in your personal data will only be initiated by you and only you personally contacting the interested person or agency.  We follow the US HIPAA and European GDPR guidelines for registrants' data protection.  As a voluntary registry this is a non binding agreement and registrants can opt out at any time by contacting our email: <\/code><\/pre>\r\n\r\n\r\n\r\n<p>wslowery.57@lgmd1d.org<\/p>\r\n\r\n\r\n\r\n<p>William S Lowery MD<\/p>\r\n\r\n\r\n<div class=\"wpforms-container wpforms-container-full\" id=\"wpforms-135\"><form id=\"wpforms-form-135\" class=\"wpforms-validate wpforms-form\" data-formid=\"135\" method=\"post\" enctype=\"multipart\/form-data\" action=\"\/lgmdwp\/wp-json\/wp\/v2\/pages\/137\" data-token=\"c774fd6fe8693eb6c5adb248a5d83b31\"><noscript class=\"wpforms-error-noscript\">Please enable JavaScript in your browser to complete this form.<\/noscript><div class=\"wpforms-field-container\"><div id=\"wpforms-135-field_1-container\" class=\"wpforms-field wpforms-field-name\" data-field-id=\"1\"><label class=\"wpforms-field-label\" for=\"wpforms-135-field_1\">Name <span class=\"wpforms-required-label\">*<\/span><\/label><div class=\"wpforms-field-row wpforms-field-medium\"><div class=\"wpforms-field-row-block wpforms-first wpforms-one-half\"><input type=\"text\" id=\"wpforms-135-field_1\" class=\"wpforms-field-name-first wpforms-field-required\" name=\"wpforms[fields][1][first]\" required><label for=\"wpforms-135-field_1\" class=\"wpforms-field-sublabel after \">First<\/label><\/div><div class=\"wpforms-field-row-block wpforms-one-half\"><input type=\"text\" id=\"wpforms-135-field_1-last\" class=\"wpforms-field-name-last wpforms-field-required\" name=\"wpforms[fields][1][last]\" required><label for=\"wpforms-135-field_1-last\" class=\"wpforms-field-sublabel after \">Last<\/label><\/div><\/div><\/div><div id=\"wpforms-135-field_2-container\" class=\"wpforms-field wpforms-field-email\" data-field-id=\"2\"><label class=\"wpforms-field-label\" for=\"wpforms-135-field_2\">Email <span class=\"wpforms-required-label\">*<\/span><\/label><input type=\"email\" id=\"wpforms-135-field_2\" class=\"wpforms-field-medium wpforms-field-required\" name=\"wpforms[fields][2]\" required><\/div><div id=\"wpforms-135-field_4-container\" class=\"wpforms-field wpforms-field-text\" data-field-id=\"4\"><label class=\"wpforms-field-label\" for=\"wpforms-135-field_4\">What autosomal dominant muscular dystrophy subtype do you have? (if unknown print &quot;pending&quot;) <span class=\"wpforms-required-label\">*<\/span><\/label><input type=\"text\" id=\"wpforms-135-field_4\" class=\"wpforms-field-medium wpforms-field-required\" name=\"wpforms[fields][4]\" required><\/div><div id=\"wpforms-135-field_5-container\" class=\"wpforms-field wpforms-field-text\" data-field-id=\"5\"><label class=\"wpforms-field-label\" for=\"wpforms-135-field_5\">Genetic test confirmation?  When tested?  What is the specific mutation?  (if unknown print &quot;pending&quot;) <span class=\"wpforms-required-label\">*<\/span><\/label><input type=\"text\" id=\"wpforms-135-field_5\" class=\"wpforms-field-medium wpforms-field-required\" name=\"wpforms[fields][5]\" required><\/div><div id=\"wpforms-135-field_6-container\" class=\"wpforms-field wpforms-field-text\" data-field-id=\"6\"><label class=\"wpforms-field-label\" for=\"wpforms-135-field_6\">Was a muscle biopsy done?  When? <span class=\"wpforms-required-label\">*<\/span><\/label><input type=\"text\" id=\"wpforms-135-field_6\" class=\"wpforms-field-medium wpforms-field-required\" name=\"wpforms[fields][6]\" required><\/div><div id=\"wpforms-135-field_7-container\" class=\"wpforms-field wpforms-field-text\" data-field-id=\"7\"><label class=\"wpforms-field-label\" for=\"wpforms-135-field_7\">Age of onset of weakness? <span class=\"wpforms-required-label\">*<\/span><\/label><input type=\"text\" id=\"wpforms-135-field_7\" class=\"wpforms-field-medium wpforms-field-required\" name=\"wpforms[fields][7]\" required><\/div><div id=\"wpforms-135-field_8-container\" class=\"wpforms-field wpforms-field-text\" data-field-id=\"8\"><label class=\"wpforms-field-label\" for=\"wpforms-135-field_8\">Current age? <span class=\"wpforms-required-label\">*<\/span><\/label><input type=\"text\" id=\"wpforms-135-field_8\" class=\"wpforms-field-medium wpforms-field-required\" name=\"wpforms[fields][8]\" required><\/div><div id=\"wpforms-135-field_10-container\" class=\"wpforms-field wpforms-field-text\" data-field-id=\"10\"><label class=\"wpforms-field-label\" for=\"wpforms-135-field_10\">Estimate the number of family or relatives that might be affected?  And would they register? <span class=\"wpforms-required-label\">*<\/span><\/label><input type=\"text\" id=\"wpforms-135-field_10\" class=\"wpforms-field-medium wpforms-field-required\" name=\"wpforms[fields][10]\" required><\/div><div id=\"wpforms-135-field_9-container\" class=\"wpforms-field wpforms-field-text\" data-field-id=\"9\"><label class=\"wpforms-field-label\" for=\"wpforms-135-field_9\">State or country of residence? <span class=\"wpforms-required-label\">*<\/span><\/label><input type=\"text\" id=\"wpforms-135-field_9\" class=\"wpforms-field-medium wpforms-field-required\" name=\"wpforms[fields][9]\" required><\/div><\/div><div class=\"wpforms-field wpforms-field-hp\"><label for=\"wpforms-135-field-hp\" class=\"wpforms-field-label\">Website<\/label><input type=\"text\" name=\"wpforms[hp]\" id=\"wpforms-135-field-hp\" class=\"wpforms-field-medium\"><\/div><div class=\"wpforms-recaptcha-container wpforms-is-recaptcha\" ><div class=\"g-recaptcha\" data-sitekey=\"6LdHacsUAAAAAB9u2Q1qK3rNuk28Er4Vrd5g0U8o\"><\/div><input type=\"text\" name=\"g-recaptcha-hidden\" class=\"wpforms-recaptcha-hidden\" style=\"position:absolute!important;clip:rect(0,0,0,0)!important;height:1px!important;width:1px!important;border:0!important;overflow:hidden!important;padding:0!important;margin:0!important;\" required><\/div><div class=\"wpforms-submit-container\" ><input type=\"hidden\" name=\"wpforms[id]\" value=\"135\"><input type=\"hidden\" name=\"wpforms[author]\" value=\"1\"><button type=\"submit\" name=\"wpforms[submit]\" class=\"wpforms-submit \" id=\"wpforms-submit-135\" value=\"wpforms-submit\" aria-live=\"assertive\" data-alt-text=\"Sending...\" data-submit-text=\"Submit\">Submit<\/button><\/div><\/form><\/div>  <!-- .wpforms-container -->","protected":false},"excerpt":{"rendered":"<p>See HERE for a complete list of myopathies. &nbsp; Our Privacy Policy:\u200b\u200b wslowery.57@lgmd1d.org William S Lowery MD<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"class_list":["post-137","page","type-page","status-publish","hentry","entry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.9 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>International Registry for All Autosomal Dominant Muscular Dystrophies, (eg. 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