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Patients</a></li> <li id="menu-item-91245" class="menu-item menu-item-type-post_type menu-item-object-page level-0 menu-item-91245"><a href="https://rarediseases.org/living-with-a-rare-disease/add-your-expertise/">Add Your Expertise</a></li> </ul></div> </div> </div> </div></section><section class="fcl fcl-sidebar-quote theme-navy no-mt no-mr sm-mb no-ml no-pt no-pr no-pb no-pl"><div class="inner"> <div class="sidebar-quote"> <div class="quote-wrapper "> <div class="quote"> <span class="the-quote">NORD’s support and partnership will allow CDISC to develop standards that facilitate more powerful research, enabling the discovery of new treatments to help patients.</span> <div class="quote-author-wrapper"> <span class="headline-font quote-author">—Dave Evans, CDISC President and CEO</span> </div> </div> </div> </div> </div></section> <section class="fcl fcl-sidebar-ad theme-default sm-mb sm-mt"> <div class="inner"> <div class="ad-content"><a href="https://learn.rarediseases.org/rare-disease-courses/?utm_source=website_sidebar&utm_medium=sidebar_ad&utm_campaign=rdorg_sidebar_promo&utm_id=Rare+Disease+Drug+Development+Promotions+2024" target="_blank" id="rdd-sidebar-ad" rel="noopener"><img alt="NORD rare disease drug development ad." width="1024" height="1024" class="alignnone size-large wp-image-274180" src="https://cdn-ilceell.nitrocdn.com/HwUzIsslGhIhcxKbTSnZdvjOZtCGbvxg/assets/images/optimized/rev-d0f7404/rarediseases.org/wp-content/uploads/2024/11/rare-disease-drug-development-tile-ad-r02-1024x1024.png" /></a></div> <div class="ad-content"><a href="https://rarediseases.org/state-resource-center/"><img alt="NORD State Resource Center Sidebar photo." width="500" height="573" class="aligncenter size-full wp-image-260046" src="https://cdn-ilceell.nitrocdn.com/HwUzIsslGhIhcxKbTSnZdvjOZtCGbvxg/assets/images/optimized/rev-d0f7404/rarediseases.org/wp-content/uploads/2024/05/NRD-2326-State-Resource-Center_Sidebar-01.png" /></a></div> </div> </section> </div> </div> <div class="col-lg-9 col-12 main-content"> <section class="fcl fcl-sidebar-menu hide-left-resp theme-default no-mt no-mr sm-mb no-ml no-pt no-pr no-pb no-pl"><div class="inner"><h4 class="widget-title">Explore More</h4> <div class="sidebar-nav"> <div class="nav-wrapper"> <p class="menu-title js-sub-nav d-lg-none d-block">Section</p> <div class="sidebar-menu-wrapper"><ul id="menu-sidebar-menu-research-1" class="sidebar-nav-menu"><li class="menu-item menu-item-type-post_type menu-item-object-page current-page-ancestor current-page-parent level-0 menu-item-91207"><a href="https://rarediseases.org/advancing-research/">Advancing Research</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page level-0 menu-item-99995"><a href="https://rarediseases.org/advancing-research/patient-registry-program/">IAMRARE® Program Powered by NORD</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page level-0 menu-item-91206"><a href="https://rarediseases.org/living-with-a-rare-disease/becoming-research-ready/">Becoming Research Ready</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children level-0 menu-item-91209"><a href="https://rarediseases.org/gene-therapy/">Gene Therapy</a> <ul class="sub-menu"> <li class="menu-item menu-item-type-post_type menu-item-object-page level-1 menu-item-91222"><a href="https://rarediseases.org/gene-therapy/resources/">Resources</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page level-1 menu-item-91223"><a href="https://rarediseases.org/gene-therapy/faqs/">Frequently Asked Questions</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page level-0 menu-item-91210"><a href="https://rarediseases.org/advancing-research/request-for-proposals/">Request for Proposals</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page level-0 menu-item-91211"><a href="https://rarediseases.org/advancing-research/research-grant-programs/">Research Grant Programs</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page current-menu-item page_item page-item-59459 current_page_item level-0 menu-item-91212"><a href="https://rarediseases.org/advancing-research/data-standards-for-rare-disease/" aria-current="page">Data Standards for Rare Disease</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children level-0 menu-item-98580"><a href="https://rarediseases.org/living-with-a-rare-disease/continuing-medical-education-cme/">Continuing Medical Education (CME)</a> <ul class="sub-menu"> <li class="menu-item menu-item-type-post_type menu-item-object-page level-1 menu-item-98581"><a href="https://rarediseases.org/?page_id=82704">CME Video Library</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page level-0 menu-item-91240"><a 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Because patient groups are small, there are significant challenges in the design, conduct, analysis, and interpretation of clinical studies. Data standards help address these challenges.</p> <hr /> <h2>What NORD Is Doing With CDISC Data Standards</h2> <p>We are partnering with the Clinical Data Interchange Standards Consortium (CDISC) to develop global data standards for rare diseases. CDISC standards drive operational efficiencies within the organizations that use them, expedite the regulatory review process, and reduce time to market for treatments developed based on patient data.</p> <p>To date, CDISC has developed Therapeutic Area User Guides for over 40 disease areas. 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data-settings="{"runtimes":"html5,flash,html4","browse_button":"gform_browse_button_35_4","container":"gform_multifile_upload_35_4","drop_element":"gform_drag_drop_area_35_4","filelist":"gform_preview_35_4","unique_names":true,"file_data_name":"file","url":"https:\/\/rarediseases.org\/?gf_page=13d885829505677","flash_swf_url":"https:\/\/rarediseases.org\/wp-includes\/js\/plupload\/plupload.flash.swf","silverlight_xap_url":"https:\/\/rarediseases.org\/wp-includes\/js\/plupload\/plupload.silverlight.xap","filters":{"mime_types":[{"title":"Allowed Files","extensions":"jpeg,png,jpg"}],"max_file_size":"3145728b"},"multipart":true,"urlstream_upload":false,"multipart_params":{"form_id":35,"field_id":4},"gf_vars":{"max_files":0,"message_id":"gform_multifile_messages_35_4","disallowed_extensions":["php","asp","aspx","cmd","csh","bat","html","htm","hta","jar","exe","com","js","lnk","htaccess","phtml","ps1","ps2","php3","php4","php5","php6","py","rb","tmp"]}}" class="gform_fileupload_multifile"> <div id="gform_drag_drop_area_35_4" class="gform_drop_area gform-theme-field-control"> <span class="gform_drop_instructions">Drop files here or </span> <button type="button" id="gform_browse_button_35_4" class="button gform_button_select_files gform-theme-button gform-theme-button--control" aria-describedby="gfield_upload_rules_35_4">Select files</button> </div> </div><span class="gfield_description gform_fileupload_rules" id="gfield_upload_rules_35_4">Accepted file types: jpeg, png, jpg, Max. file size: 3 MB.</span><ul class="validation_message--hidden-on-empty gform-ul-reset" id="gform_multifile_messages_35_4"></ul> </div><div id="gform_preview_35_4" class="ginput_preview_list"></div></div><div id="field_35_3" class="gfield gfield--type-textarea gfield--input-type-textarea gfield_contains_required field_sublabel_above gfield--has-description field_description_above field_validation_below gfield_visibility_visible" data-js-reload="field_35_3"><label class="gfield_label gform-field-label" for="input_35_3">Comments<span class="gfield_required"><span class="gfield_required gfield_required_text">(Required)</span></span></label><div class="gfield_description" id="gfield_description_35_3">Please let us know what's on your mind. Have a question for us? Ask away.</div><div class="ginput_container ginput_container_textarea"><textarea name="input_3" id="input_35_3" class="textarea medium" aria-describedby="gfield_description_35_3" maxlength="600" aria-required="true" aria-invalid="false" rows="10" cols="50"></textarea></div></div><div id="field_35_5" class="gfield gfield--type-honeypot gform_validation_container field_sublabel_above gfield--has-description field_description_above field_validation_below gfield_visibility_visible" data-js-reload="field_35_5"><label class="gfield_label gform-field-label" for="input_35_5">Email</label><div class="gfield_description" id="gfield_description_35_5">This field is for validation purposes and should be left unchanged.</div><div class="ginput_container"><input name="input_5" id="input_35_5" type="text" value="" autocomplete="new-password" /></div></div></div></div> <div class="gform-footer gform_footer top_label"> <input type="submit" id="gform_submit_button_35" class="gform_button button" onclick="gform.submission.handleButtonClick(this)" value="Submit" /> <input type="hidden" name="gform_ajax" value="form_id=35&title=&description=&tabindex=0&theme=gravity-theme" /> <input type="hidden" class="gform_hidden" name="gform_submission_method" data-js="gform_submission_method_35" value="iframe" /> <input type="hidden" class="gform_hidden" name="is_submit_35" value="1" /> <input type="hidden" class="gform_hidden" name="gform_submit" value="35" /> <input type="hidden" class="gform_hidden" name="gform_unique_id" value="" /> <input type="hidden" class="gform_hidden" name="state_35" value="WyJbXSIsImRhODZkOTEyM2FhMDJkZTQxODJmNzc4MDBlYmM3NWVkIl0=" /> <input type="hidden" autocomplete="off" class="gform_hidden" name="gform_target_page_number_35" id="gform_target_page_number_35" value="0" /> <input type="hidden" autocomplete="off" class="gform_hidden" name="gform_source_page_number_35" id="gform_source_page_number_35" value="1" /> <input type="hidden" name="gform_field_values" value="" /> <input type="hidden" name="gform_uploaded_files" id="gform_uploaded_files_35" value="" /> </div> </form> </div> <iframe style="display: none;width: 0px;height: 0px;" src="about:blank" name="gform_ajax_frame_35" id="gform_ajax_frame_35" title="This iframe contains the logic required to handle Ajax powered Gravity Forms."></iframe> <script type="text/javascript"> /* <![CDATA[ */ gform.initializeOnLoaded( function() {gformInitSpinner( 35, 'https://rarediseases.org/wp-content/plugins/gravityforms/images/spinner.svg', true );jQuery('#gform_ajax_frame_35').on('load',function(){var contents = jQuery(this).contents().find('*').html();var is_postback = contents.indexOf('GF_AJAX_POSTBACK') >= 0;if(!is_postback){return;}var form_content = jQuery(this).contents().find('#gform_wrapper_35');var is_confirmation = jQuery(this).contents().find('#gform_confirmation_wrapper_35').length > 0;var is_redirect = contents.indexOf('gformRedirect(){') >= 0;var is_form = form_content.length > 0 && ! is_redirect && ! is_confirmation;var mt = parseInt(jQuery('html').css('margin-top'), 10) + parseInt(jQuery('body').css('margin-top'), 10) + 100;if(is_form){jQuery('#gform_wrapper_35').html(form_content.html());if(form_content.hasClass('gform_validation_error')){jQuery('#gform_wrapper_35').addClass('gform_validation_error');} else {jQuery('#gform_wrapper_35').removeClass('gform_validation_error');}setTimeout( function() { /* delay the scroll by 50 milliseconds to fix a bug in chrome */ jQuery(document).scrollTop(jQuery('#gform_wrapper_35').offset().top - mt); }, 50 );if(window['gformInitDatepicker']) {gformInitDatepicker();}if(window['gformInitPriceFields']) {gformInitPriceFields();}var current_page = jQuery('#gform_source_page_number_35').val();gformInitSpinner( 35, 'https://rarediseases.org/wp-content/plugins/gravityforms/images/spinner.svg', true );jQuery(document).trigger('gform_page_loaded', [35, current_page]);window['gf_submitting_35'] = false;}else if(!is_redirect){var confirmation_content = jQuery(this).contents().find('.GF_AJAX_POSTBACK').html();if(!confirmation_content){confirmation_content = contents;}jQuery('#gform_wrapper_35').replaceWith(confirmation_content);jQuery(document).scrollTop(jQuery('#gf_35').offset().top - mt);jQuery(document).trigger('gform_confirmation_loaded', [35]);window['gf_submitting_35'] = false;wp.a11y.speak(jQuery('#gform_confirmation_message_35').text());}else{jQuery('#gform_35').append(contents);if(window['gformRedirect']) {gformRedirect();}}jQuery(document).trigger("gform_pre_post_render", [{ formId: "35", currentPage: "current_page", abort: function() { this.preventDefault(); } }]); if (event && event.defaultPrevented) { return; } const gformWrapperDiv = document.getElementById( "gform_wrapper_35" ); if ( gformWrapperDiv ) { const visibilitySpan = document.createElement( "span" ); visibilitySpan.id = "gform_visibility_test_35"; gformWrapperDiv.insertAdjacentElement( "afterend", visibilitySpan ); } const visibilityTestDiv = document.getElementById( "gform_visibility_test_35" ); let postRenderFired = false; function triggerPostRender() { if ( postRenderFired ) { return; } postRenderFired = true; jQuery( document ).trigger( 'gform_post_render', [35, current_page] ); gform.utils.trigger( { event: 'gform/postRender', native: false, data: { formId: 35, currentPage: current_page } } ); gform.utils.trigger( { event: 'gform/post_render', native: false, data: { formId: 35, currentPage: current_page } } ); if ( visibilityTestDiv ) { visibilityTestDiv.parentNode.removeChild( visibilityTestDiv ); } } function debounce( func, wait, immediate ) { var timeout; return function() { var context = this, args = arguments; var later = function() { timeout = null; if ( !immediate ) func.apply( context, args ); }; var callNow = immediate && !timeout; clearTimeout( timeout ); timeout = setTimeout( later, wait ); if ( callNow ) func.apply( context, args ); }; } const debouncedTriggerPostRender = debounce( function() { triggerPostRender(); }, 200 ); if ( visibilityTestDiv && visibilityTestDiv.offsetParent === null ) { const observer = new MutationObserver( ( mutations ) => { mutations.forEach( ( mutation ) => { if ( mutation.type === 'attributes' && visibilityTestDiv.offsetParent !== null ) { debouncedTriggerPostRender(); observer.disconnect(); } }); }); observer.observe( document.body, { attributes: true, childList: false, subtree: true, attributeFilter: [ 'style', 'class' ], }); } else { triggerPostRender(); } } );} ); /* ]]> */ </script> </div> <button type="button" class="pum-close popmake-close" aria-label="Close"> × </button> </div> </div> <div id="pum-257856" role="dialog" aria-modal="false" class="pum pum-overlay pum-theme-11442 pum-theme-content-only popmake-overlay click_open" data-popmake="{"id":257856,"slug":"rdd-sponsorship-inquiries","theme_id":11442,"cookies":[],"triggers":[{"type":"click_open","settings":{"cookie_name":"","extra_selectors":""}}],"mobile_disabled":null,"tablet_disabled":null,"meta":{"display":{"stackable":false,"overlay_disabled":false,"scrollable_content":false,"disable_reposition":false,"size":"medium","responsive_min_width":"0%","responsive_min_width_unit":false,"responsive_max_width":"100%","responsive_max_width_unit":false,"custom_width":"640px","custom_width_unit":false,"custom_height":"380px","custom_height_unit":false,"custom_height_auto":false,"location":"center","position_from_trigger":false,"position_top":"100","position_left":"0","position_bottom":"0","position_right":"0","position_fixed":false,"animation_type":"fade","animation_speed":"350","animation_origin":"center top","overlay_zindex":false,"zindex":"1999999999"},"close":{"text":"","button_delay":"0","overlay_click":false,"esc_press":false,"f4_press":false},"click_open":[]}}"> <div id="popmake-257856" class="pum-container popmake theme-11442 pum-responsive pum-responsive-medium responsive size-medium"> <div class="pum-content popmake-content" tabindex="0"> <div class="gf_browser_chrome gform_wrapper gravity-theme gform-theme--no-framework" data-form-theme="gravity-theme" data-form-index="0" id="gform_wrapper_33"><div id="gf_33" class="gform_anchor" tabindex="-1"></div><form method="post" enctype="multipart/form-data" target="gform_ajax_frame_33" id="gform_33" action="/advancing-research/data-standards-for-rare-disease/#gf_33" data-formid="33" novalidate><div class="nitro-exclude"><input type="hidden" id="g-recaptcha-response" name="g-recaptcha-response" /><script nitro-exclude> <input type='hidden' class='gforms-pum' value='{"closepopup":false,"closedelay":0,"openpopup":false,"openpopup_id":0}' /> grecaptcha.ready(function() { grecaptcha.execute("6Lc_CEopAAAAACjj_tyibG1kHMOp5bOEly7_pvZb", {action: "submit"}).then(function(token) { var recaptchaResponse = document.getElementById("g-recaptcha-response"); if (recaptchaResponse) { recaptchaResponse.value = token; } }); }); </script></div> <div class="gform-body gform_body"><div id="gform_fields_33" class="gform_fields top_label form_sublabel_above description_above validation_below"><fieldset id="field_33_1" class="gfield gfield--type-name gfield--input-type-name gfield_contains_required field_sublabel_above gfield--no-description field_description_above field_validation_below gfield_visibility_visible" data-js-reload="field_33_1"><legend class="gfield_label gform-field-label gfield_label_before_complex">Name<span class="gfield_required"><span class="gfield_required gfield_required_text">(Required)</span></span></legend><div class="ginput_complex ginput_container ginput_container--name no_prefix has_first_name no_middle_name has_last_name no_suffix gf_name_has_2 ginput_container_name gform-grid-row" id="input_33_1"> <span id="input_33_1_3_container" class="name_first gform-grid-col gform-grid-col--size-auto"> <label for="input_33_1_3" class="gform-field-label gform-field-label--type-sub ">First</label> <input type="text" name="input_1.3" id="input_33_1_3" value="" aria-required="true" autocomplete="given-name" /> </span> <span id="input_33_1_6_container" class="name_last gform-grid-col gform-grid-col--size-auto"> <label for="input_33_1_6" class="gform-field-label gform-field-label--type-sub ">Last</label> <input type="text" name="input_1.6" id="input_33_1_6" value="" aria-required="true" autocomplete="family-name" /> </span> </div></fieldset><fieldset id="field_33_2" class="gfield gfield--type-email gfield--input-type-email gfield_contains_required field_sublabel_above gfield--no-description field_description_above field_validation_below gfield_visibility_visible" data-js-reload="field_33_2"><legend class="gfield_label gform-field-label gfield_label_before_complex">Email<span class="gfield_required"><span class="gfield_required gfield_required_text">(Required)</span></span></legend><div class="ginput_complex ginput_container ginput_container_email gform-grid-row" id="input_33_2_container"> <span id="input_33_2_1_container" class="ginput_left gform-grid-col gform-grid-col--size-auto"> <label for="input_33_2" class="gform-field-label gform-field-label--type-sub ">Enter Email</label> <input class="" type="email" name="input_2" id="input_33_2" value="" aria-required="true" aria-invalid="false" autocomplete="email" /> </span> <span id="input_33_2_2_container" class="ginput_right gform-grid-col gform-grid-col--size-auto"> <label for="input_33_2_2" class="gform-field-label gform-field-label--type-sub ">Confirm Email</label> <input class="" type="email" name="input_2_2" id="input_33_2_2" value="" aria-required="true" aria-invalid="false" autocomplete="email" /> </span> <div class="gf_clear gf_clear_complex"></div> </div></fieldset><div id="field_33_3" class="gfield gfield--type-textarea gfield--input-type-textarea gfield_contains_required field_sublabel_above gfield--has-description field_description_above field_validation_below gfield_visibility_visible" data-js-reload="field_33_3"><label class="gfield_label gform-field-label" for="input_33_3">Comments<span class="gfield_required"><span class="gfield_required gfield_required_text">(Required)</span></span></label><div class="gfield_description" id="gfield_description_33_3">Please let us know what's on your mind. 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/* ]]> */ </script> <script type="text/javascript"> /* <![CDATA[ */ gform.initializeOnLoaded( function() {jQuery(document).trigger("gform_pre_post_render", [{ formId: "33", currentPage: "1", abort: function() { this.preventDefault(); } }]); if (event && event.defaultPrevented) { return; } const gformWrapperDiv = document.getElementById( "gform_wrapper_33" ); if ( gformWrapperDiv ) { const visibilitySpan = document.createElement( "span" ); visibilitySpan.id = "gform_visibility_test_33"; gformWrapperDiv.insertAdjacentElement( "afterend", visibilitySpan ); } const visibilityTestDiv = document.getElementById( "gform_visibility_test_33" ); let postRenderFired = false; function triggerPostRender() { if ( postRenderFired ) { return; } postRenderFired = true; jQuery( document ).trigger( 'gform_post_render', [33, 1] ); gform.utils.trigger( { event: 'gform/postRender', native: false, data: { formId: 33, currentPage: 1 } } ); gform.utils.trigger( { event: 'gform/post_render', native: false, data: { formId: 33, currentPage: 1 } } ); if ( visibilityTestDiv ) { visibilityTestDiv.parentNode.removeChild( visibilityTestDiv ); } } function debounce( func, wait, immediate ) { var timeout; return function() { var context = this, args = arguments; var later = function() { timeout = null; if ( !immediate ) func.apply( context, args ); }; var callNow = immediate && !timeout; clearTimeout( timeout ); timeout = setTimeout( later, wait ); if ( callNow ) func.apply( context, args ); }; } const debouncedTriggerPostRender = debounce( function() { triggerPostRender(); }, 200 ); if ( visibilityTestDiv && visibilityTestDiv.offsetParent === null ) { const observer = new MutationObserver( ( mutations ) => { mutations.forEach( ( mutation ) => { if ( mutation.type === 'attributes' && visibilityTestDiv.offsetParent !== null ) { debouncedTriggerPostRender(); observer.disconnect(); } }); }); observer.observe( document.body, { attributes: true, childList: false, subtree: true, attributeFilter: [ 'style', 'class' ], }); } else { triggerPostRender(); } } ); /* ]]> */ </script> <script type="text/javascript"> document.addEventListener("cookieyes-consent-update", function() { console.log('cookie consent done'); if (CookieYes.isAllowed("analytics")) { // Adjust the category as needed var script = document.createElement("script"); script.src = "https://www.google.com/recaptcha/api.js?render=6Lc_CEopAAAAACjj_tyibG1kHMOp5bOEly7_pvZb"; document.head.appendChild(script); } }); </script> <script> let donateButton = document.querySelector('.js-donate-button-redirect'); if ( donateButton ) { ;(function (win) { win.egProps = { campaigns: [ { campaignId: `446007`, donation: { modal: { urlParams: { amount: 50 }, elementSelector: '.js-donate-button-redirect' }, // Add ABANDON cart NUDGE Code Here to enable } } ] } win.document.body.appendChild(makeEGScript()) /** * Create the embed script */ function makeEGScript() { var egScript = win.document.createElement('script') egScript.setAttribute('type', 'text/javascript') egScript.setAttribute('async', 'true') egScript.setAttribute('src', 'https://sdk.classy.org/embedded-giving.js') return egScript } /** * Read URL Params from your website. This could potentially * be included in the embed snippet */ function readURLParams() { const searchParams = new URLSearchParams(location.search) const validUrlParams = ['c_src', 'c_src2'] return validUrlParams.reduce(function toURLParamsMap(urlParamsSoFar, validKey) { const value = searchParams.get(validKey) return value === null ? urlParamsSoFar : { ...urlParamsSoFar, [validKey]: value } }, {}) } })(window) } </script> <script src="https://cdn-ilceell.nitrocdn.com/HwUzIsslGhIhcxKbTSnZdvjOZtCGbvxg/assets/static/optimized/rev-fecc276/cdnjs.cloudflare.com/ajax/libs/magnific-popup.js/1.1.0/render-blocking-jquery.magnific-popup.min.js"></script> <script src="https://cdn-ilceell.nitrocdn.com/HwUzIsslGhIhcxKbTSnZdvjOZtCGbvxg/assets/static/optimized/rev-fecc276/cdn.jsdelivr.net/npm/select2@4.1.0-rc.0/dist/js/render-blocking-select2.min.js"></script> </body></html>