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size="30" maxlength="200" value="59652" /></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-31c1c330f" style="padding-top:40px" ><div class="mcb-background-overlay"></div><div class="section_wrapper mcb-section-inner mcb-section-inner-31c1c330f"><div class="wrap mcb-wrap mcb-wrap-98e53fc7f 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-98e53fc7f" ><div class="mcb-wrap-background-overlay"></div><div class="column mcb-column mcb-item-335d5ad27 one tablet-one mobile-one column_column" style="" ><div class="mcb-column-inner mcb-column-inner-335d5ad27 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-4dffb9415 full-width full-width-deprecated" style="" ><div class="mcb-background-overlay"></div><div class="section_wrapper mcb-section-inner mcb-section-inner-4dffb9415"><div class="wrap mcb-wrap mcb-wrap-fde544817 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-fde544817" ><div class="mcb-wrap-background-overlay"></div><div class="column mcb-column mcb-item-0e12220b9 one tablet-one mobile-one column_column" style="" ><div class="mcb-column-inner mcb-column-inner-0e12220b9 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-8e1d2862e 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-8e1d2862e"><div class="wrap mcb-wrap mcb-wrap-38992f64e 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-38992f64e" ><div class="mcb-wrap-background-overlay"></div><div class="column mcb-column mcb-item-989228b17 one tablet-one mobile-one column_column" style="" ><div class="mcb-column-inner mcb-column-inner-989228b17 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-74cf8e9bc 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-74cf8e9bc" ><div class="mcb-wrap-background-overlay"></div><div class="column mcb-column mcb-item-a66bc95f4 one tablet-one mobile-one column_column" style="" ><div class="mcb-column-inner mcb-column-inner-a66bc95f4 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. 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