International Outreach Program, St. Jude Children's Research Hospital, Memphis, TN 38105-2794, USA.
Mol Cell Endocrinol. 2012 Mar 31;351(1):37-43. doi: 10.1016/j.mce.2011.10.015. Epub 2011 Oct 23.
Adrenocortical tumor (ACT), a rare tumor with a heterogeneous presentation, incompletely understood pathogenesis, and generally poor prognosis, occurs in 1-2 people per million and is even more uncommon in the pediatric population. Such rare cancers are a challenge to clinical practice. Exchange of experience, information, and data on rare cancers is lacking, and outcomes for these rare cancers could be improved through the establishment of an international registry. The establishment of the International Pediatric Adrenocortical Tumor Registry (IPACTR) in 1990 by the St. Jude Children's Research Hospital International Outreach Program offered a new opportunity to collect clinical and laboratory features, treatment practices, and outcome data for children with ACT, research this disease, and systematically investigate how to improve patient outcomes. These efforts will improve the availability of information for both patients and the medical community.
肾上腺皮质肿瘤（adrenocortical tumor，ACT）是一种罕见的肿瘤，具有异质性表现、发病机制不完全清楚和预后一般较差的特点，其发病率为每百万人中 1-2 人，在儿科人群中更为罕见。此类罕见癌症对临床实践构成挑战。罕见癌症的经验、信息和数据交流不足，通过建立国际登记处可以改善这些罕见癌症的预后。1990 年，圣裘德儿童研究医院国际拓展计划（St. Jude Children's Research Hospital International Outreach Program）成立了国际儿科肾上腺皮质肿瘤登记处（International Pediatric Adrenocortical Tumor Registry，IPACTR），为收集儿童 ACT 的临床和实验室特征、治疗实践和结果数据、研究该疾病以及系统调查如何改善患者预后提供了新的机会。这些努力将提高患者和医疗界获取信息的便利性。
