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your search" /> <input type="submit" class="display-none" value="" /> <label class="apbct_special_field" id="apbct_label_id53110" for="apbct__email_id__search_form_53110">53110</label><input id="apbct__email_id__search_form_53110" class="apbct_special_field apbct__email_id__search_form" autocomplete="off" name="apbct__email_id__search_form_53110" type="text" value="53110" size="30" apbct_event_id="53110" maxlength="200" /><input id="apbct_submit_id__search_form_53110" class="apbct_special_field apbct__email_id__search_form" name="apbct_submit_id__search_form_53110" type="submit" size="30" maxlength="200" value="53110" /></form> </div> </div> </div> </div> </header> <div id="Subheader" style=""><div class="container"><div class="column one"><h1 class="title">CRB1 Patient Registry</h1></div></div></div> </div>  <div id="Content" role="main"> <div class="content_wrapper clearfix"> <div class="sections_group"> <div class="entry-content" itemprop="mainContentOfPage"> <div class="mfn-builder-content mfn-default-content-buider"><div class="section mcb-section mfn-default-section mcb-section-064be89be" style="padding-top:40px" ><div class="mcb-background-overlay"></div><div class="section_wrapper mcb-section-inner mcb-section-inner-064be89be"><div class="wrap mcb-wrap mcb-wrap-800be8869 one tablet-one mobile-one valign-top clearfix" data-desktop-col="one" data-tablet-col="tablet-one" data-mobile-col="mobile-one" style="padding:;background-color:" ><div class="mcb-wrap-inner mcb-wrap-inner-800be8869" ><div class="mcb-wrap-background-overlay"></div><div class="column mcb-column mcb-item-44ec89084 one tablet-one mobile-one column_column" style="" ><div class="mcb-column-inner mcb-column-inner-44ec89084 mcb-item-column-inner"><div class="column_attr mfn-inline-editor clearfix" style=""><h2 class="blue">The Curing Retinal Blindness Foundation is proud to partner with Sanford Research, a nonprofit research institution, to create a CRB1 LCA/RP patient registry.</h2></div></div></div></div></div></div></div><div class="section mcb-section mfn-default-section mcb-section-55438684f full-width full-width-deprecated" style="" ><div class="mcb-background-overlay"></div><div class="section_wrapper mcb-section-inner mcb-section-inner-55438684f"><div class="wrap mcb-wrap mcb-wrap-f57741490 one tablet-one mobile-one valign-top clearfix" data-desktop-col="one" data-tablet-col="tablet-one" data-mobile-col="mobile-one" style="padding:;background-color:" ><div class="mcb-wrap-inner mcb-wrap-inner-f57741490" ><div class="mcb-wrap-background-overlay"></div><div class="column mcb-column mcb-item-9c8d896bd one tablet-one mobile-one column_column" style="" ><div class="mcb-column-inner mcb-column-inner-9c8d896bd mcb-item-column-inner"><div class="column_attr mfn-inline-editor clearfix lazyload" style="background-repeat:no-repeat;background-position:center top;padding:15px 0px 0px 0px;" data-back="https://crb1.org/wp-content/uploads/2020/05/blue-line-divider-1920w.png"></div></div></div></div></div></div></div><div class="section mcb-section mfn-default-section mcb-section-7ccf7baa5 nMargin" style="padding-top:40px;background-color:rgba(0, 0, 0, .01)" ><div class="mcb-background-overlay"></div><div class="section_wrapper mcb-section-inner mcb-section-inner-7ccf7baa5"><div class="wrap mcb-wrap mcb-wrap-ab3c8747d one tablet-one mobile-one valign-top clearfix" data-desktop-col="one" data-tablet-col="tablet-one" data-mobile-col="mobile-one" style="padding:;background-color:" ><div class="mcb-wrap-inner mcb-wrap-inner-ab3c8747d" ><div class="mcb-wrap-background-overlay"></div><div class="column mcb-column mcb-item-601141bb4 one tablet-one mobile-one column_column" style="" ><div class="mcb-column-inner mcb-column-inner-601141bb4 mcb-item-column-inner"><div class="column_attr mfn-inline-editor clearfix" style=""><h3>It’s here! The CRBF and Coordination of Rare Disease at Sanford (CoRDS) Patient Registry for CRB1 LCA/RP.</h3> <h2>For Families</h2> <p><b>What is the purpose of the Registry?</b></p> <p>While there are many benefits to a patient regisry, the following are a few highlights:</p> <ul> <li>Enable the Curing Retinal Blindness Foundation to provide you with information about research for people with your inherited retinal disease, including clinical trials</li> <li>Enable the collection and sharing of information about CRB1 LCA/RP from a large number of patients with the research and medical community, so that scientists and doctors can better understand this disease and how to treat it.</li> <li>Connect scientists studying CRB1 LCA/RP diseases with patients in the registry who may qualify for their research studies or clinical trials.</li> </ul> <hr class="no_line" style="margin: 0 auto 10px auto"/> <div style="text-align:center"><a href="https://research.sanfordhealth.org/rare-disease-registry" target=_blank"><img src="data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAJYAAACWAQMAAAAGz+OhAAAABlBMVEUAAAD///+l2Z/dAAAAAXRSTlMAQObYZgAAAAlwSFlzAAAOxAAADsQBlSsOGwAAABpJREFUSMftwTEBAAAAwqD1T20ND6AAAIB3Awu4AAFdkeOZAAAAAElFTkSuQmCC" data-src="/wp-content/uploads/2020/11/Sanford_CoRDS_Enroll_2-150x150-1.jpg" decoding="async" class="lazyload" data-eio-rwidth="150" data-eio-rheight="150"><noscript><img src="/wp-content/uploads/2020/11/Sanford_CoRDS_Enroll_2-150x150-1.jpg" data-eio="l"></noscript></a></div> <hr class="no_line" style="margin: 0 auto 10px auto"/> <p>Click <a href="https://cordsconnect.sanfordresearch.org/BayaPES/sf/screeningForm?id=SFSFL" class="blackLink" target="_blank">here</a> to enroll in the CRB1 Disease Registry.</p> <p>For questions specific to the CoRDS CRB1 registry please click <a href="https://research.sanfordhealth.org/contact-us" class="blackLink" target="_blank">here</a> for contact information.</p> <p>For questions regarding the CRBF please contact Kristin Smedley, CEO, CRBF at <a href="mailto:curingretinalblindness@gmail.com" class="blackLink" target="_blank">curingretinalblindness@gmail.com</a></p></div></div></div></div></div><div class="wrap mcb-wrap mcb-wrap-6bfca54b6 one tablet-one mobile-one valign-top clearfix" data-desktop-col="one" data-tablet-col="tablet-one" data-mobile-col="mobile-one" style="padding:;background-color:" ><div class="mcb-wrap-inner mcb-wrap-inner-6bfca54b6" ><div class="mcb-wrap-background-overlay"></div><div class="column mcb-column mcb-item-39740f54c one tablet-one mobile-one column_column" style="" ><div class="mcb-column-inner mcb-column-inner-39740f54c mcb-item-column-inner"><div class="column_attr mfn-inline-editor clearfix" style=""><h2>For Researchers</h2> <p>The patient de-identifiable data in the CoRDS rare disease registry is accessible to our researchers and free to obtain. To begin the approval process, please download the <a href="https://research.sanfordhealth.org/-/media/research/files/cords/2020-05-18-cords-researcher-access-request-form.pdf" target="_blank" class="blackLink">CoRDS Researcher Access Request Form</a>, fill it out and email to <a href="mailto:cords@sanfordhealth.org" class="blackLink">CoRDS</a>.</p> <p>You can also contact us (utilizing the link below) and we can work with you and CoRDS to make sure you can get the data you need for your specific research and study needs.</p> </div></div></div><div class="column mcb-column mcb-item-3181026ff one tablet-one mobile-one column_image" style="" ><div class="mcb-column-inner mcb-column-inner-3181026ff mcb-item-image-inner"><div class="image_frame element_classes image_item no_link scale-with-grid aligncenter no_border" ><div class="image_wrapper"><img class="scale-with-grid lazyload" src="data:image/gif;base64,R0lGODlhAQABAAAAACH5BAEKAAEALAAAAAABAAEAAAICTAEAOw==" alt="CRB1 Patient Registry" title="" data-src="https://crb1.org/wp-content/uploads/2020/11/cords-registry-banner.png" decoding="async" /><noscript><img class="scale-with-grid" src="https://crb1.org/wp-content/uploads/2020/11/cords-registry-banner.png" alt="CRB1 Patient Registry" title="" data-eio="l" /></noscript></div></div> </div></div></div></div></div></div><div class="section mcb-section mfn-default-section mcb-section-dc98aeb34" style="padding-top:40px;background-color:#034ea2" ><div class="mcb-background-overlay"></div><div class="section_wrapper mcb-section-inner mcb-section-inner-dc98aeb34"><div class="wrap mcb-wrap mcb-wrap-bcd3fe0c5 one tablet-one mobile-one valign-top clearfix" data-desktop-col="one" data-tablet-col="tablet-one" data-mobile-col="mobile-one" style="padding:;background-color:" ><div class="mcb-wrap-inner mcb-wrap-inner-bcd3fe0c5" ><div class="mcb-wrap-background-overlay"></div><div class="column mcb-column mcb-item-70bac095d one tablet-one mobile-one column_column" style="" ><div class="mcb-column-inner mcb-column-inner-70bac095d mcb-item-column-inner"><div class="column_attr mfn-inline-editor clearfix align_center" style=""><h2 class="white">For help registering with CoRDS, please contact us.</h2></div></div></div><div class="column mcb-column mcb-item-2ec7fbeaf one tablet-one mobile-one column_column" style="" ><div class="mcb-column-inner mcb-column-inner-2ec7fbeaf mcb-item-column-inner"><div class="column_attr mfn-inline-editor clearfix align_center" style=""><a href="/contact" target="_blank" class="yellowbutton">Contact</a></div></div></div></div></div></div></div></div><div class="section the_content no_content"><div class="section_wrapper"><div class="the_content_wrapper "></div></div></div> <div class="section section-page-footer"> <div class="section_wrapper clearfix"> <div class="column one page-pager"> <div class="mcb-column-inner"> </div> </div> </div> </div> </div> </div> </div> </div>   <footer id="Footer" class="clearfix"> <div class="widgets_wrapper" style=""><div class="container"><div class="column one-fourth"><aside id="media_image-3" class="widget widget_media_image"><img width="300" height="204" src="data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAASwAAADMAQMAAADzgAwAAAAABlBMVEUAAAD///+l2Z/dAAAAAXRSTlMAQObYZgAAAAlwSFlzAAAOxAAADsQBlSsOGwAAAB5JREFUWMPtwQENAAAAwqD3T20PBxQAAAAAAAAAfBofFAAB9ISzJwAAAABJRU5ErkJggg==" class="image wp-image-232 attachment-medium size-medium lazyload" alt="" style="max-width: 100%; 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