National SBA Registry Demonstration Project 2

描述（由申请人提供）：康涅狄格州儿童医疗中心将与马萨诸塞州斯普林菲尔德的Shriners儿童医院合作，收集SB儿童和青少年的临床数据。收集的数据将输入国家登记处，以评估当前的临床实践，目标是改善患者的预后。来自新英格兰西部和南部以及纽约州东部的SB患者将通过科学合作获得护理。

DESCRIPTION (provided by applicant): Connecticut Children's Medical Center will partner with Shriners Hospitals for Children of Springfield, MA to collect clinical data on children and youth with SB. The data collected will be entered into a national registry for evaluation of current clinical practices with the goal of better patient outcomes. SB patients from western and southern New England and eastern New York State will receive care through scientific collaboration.