{"id":493,"date":"2013-10-01T15:54:29","date_gmt":"2013-10-01T19:54:29","guid":{"rendered":"https:\/\/www.bu.edu\/sscores\/?page_id=493"},"modified":"2015-01-29T11:38:24","modified_gmt":"2015-01-29T16:38:24","slug":"493-2","status":"publish","type":"page","link":"https:\/\/www.bu.edu\/sscores\/493-2\/","title":{"rendered":""},"content":{"rendered":"<p style=\"text-align: center;\"><a href=\"\/cort\/files\/2013\/10\/SCARlogo-TIGHT.jpg\"><img loading=\"lazy\" height=\"216\" width=\"407\" title=\"SCARlogo TIGHT\" alt=\"SCARlogo TIGHT\" src=\"\/cort\/files\/2013\/10\/SCARlogo-TIGHT-636x337.jpg\" class=\"aligncenter\" \/><\/a><\/p>\n<h3><a href=\"http:\/\/sites.bu.edu\/scar\/\">Click here to be brought to the SCaR website!<\/a><\/h3>\n<p><b><i>The community needs to cooperate around a common clinical dataset in order to understand rare disease complications in which individual centers cannot obtain enough data and associated clinical samples on their own.<\/i><\/b><\/p>\n<p>The goals of this are:<\/p>\n<ul>\n<li>To develop a large national clinical database<\/li>\n<li>To identify biomarkers of disease with an associated strong clinical database<\/li>\n<\/ul>\n<p>What are the advantages of SCaR?<\/p>\n<ul>\n<li>Offers access to a clinical data repository that was designed by leaders in the field<\/li>\n<li>Utilizes an online clinical data collection that is professionally managed<\/li>\n<li>Offers seamless coordination across groups<\/li>\n<li>Allows for true national collaborative group<\/li>\n<li>Allows inclusion of new clinical data source documents<\/li>\n<\/ul>\n<p>What will be collected?<\/p>\n<ul>\n<li>Demographics<\/li>\n<li>Physical exam and laboratory data<\/li>\n<li>Patient Reported Outcomes<\/li>\n<li>Clinical samples: \u00a0Skin biopsy and serum<\/li>\n<\/ul>\n<p>Who can be enrolled?<\/p>\n<ul>\n<li>Early Diffuse SSc patients<\/li>\n<li>Limited SSc patients with and without PAH<\/li>\n<li>Patients with ILD<\/li>\n<li>Other groups?<\/li>\n<\/ul>\n<p>How can I support my coordinator in order to participate?<\/p>\n<ul>\n<li>Through a subcontract, the BU CORT will support data and sample collection, focusing on early diffuse patients.<\/li>\n<\/ul>\n<p>Nuts and Bolts<\/p>\n<ul>\n<li>All participating investigators will be included as co-author on publications<\/li>\n<li>Sites will be provided skin biopsy kits, tubes for biopsies and FEDEX mailers<\/li>\n<li>Investigators with sites enrolling 5 or more patients will be provided with iPADs for waiting room use by patients for PROs<\/li>\n<\/ul>\n<h3><b>For more information or to join the SCaR investigators, please contact<\/b>\u00a0<a href=\"mailto:eas@bu.edu\">Eric Stratton<\/a><\/h3>\n","protected":false},"excerpt":{"rendered":"<p>Click here to be brought to the SCaR website! The community needs to cooperate around a common clinical dataset in order to understand rare disease complications in which individual centers cannot obtain enough data and associated clinical samples on their own. The goals of this are: To develop a large national clinical database To identify [&hellip;]<\/p>\n","protected":false},"author":4558,"featured_media":0,"parent":0,"menu_order":5,"comment_status":"closed","ping_status":"closed","template":"","meta":[],"_links":{"self":[{"href":"https:\/\/www.bu.edu\/sscores\/wp-json\/wp\/v2\/pages\/493"}],"collection":[{"href":"https:\/\/www.bu.edu\/sscores\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.bu.edu\/sscores\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.bu.edu\/sscores\/wp-json\/wp\/v2\/users\/4558"}],"replies":[{"embeddable":true,"href":"https:\/\/www.bu.edu\/sscores\/wp-json\/wp\/v2\/comments?post=493"}],"version-history":[{"count":10,"href":"https:\/\/www.bu.edu\/sscores\/wp-json\/wp\/v2\/pages\/493\/revisions"}],"predecessor-version":[{"id":591,"href":"https:\/\/www.bu.edu\/sscores\/wp-json\/wp\/v2\/pages\/493\/revisions\/591"}],"wp:attachment":[{"href":"https:\/\/www.bu.edu\/sscores\/wp-json\/wp\/v2\/media?parent=493"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}