Murray Donna S, Fedele Angie, Shui Amy, Coury Daniel L
Autism Speaks Autism Treatment Network; Boston, Massachusetts Cincinnati Children's Hospital Medical Center, Division of Developmental and Behavioral Pediatrics, The Kelly O'Leary Center for Autism Spectrum Disorders, Cincinnati, Ohio; Autism Intervention Research Network on Physical Health (Health Resources and Services Administration);
Autism Speaks Autism Treatment Network; Boston, Massachusetts Autism Intervention Research Network on Physical Health (Health Resources and Services Administration);
Pediatrics. 2016 Feb;137 Suppl 2:S72-8. doi: 10.1542/peds.2015-2851E.
Patient registries can effectively collect data over a long period of time to provide a better understanding of the typical presentation of specific conditions. The autism spectrum disorders (ASDs) have experienced a marked increase in reported prevalence over the past 20 years for reasons that are not completely clear. The Autism Treatment Network (ATN) Registry was established to facilitate investigations into a variety of questions critical to expanding our understanding of ASDs. Here we describe the establishment of the registry, its components, some of its findings to date, and opportunities for further use of this data.
Participants are eligible for enrollment into the ATN registry if they are between the ages of 2.0 and 17.6 years at the time of enrollment and meet criteria for ASD as determined by clinical consensus on the basis of specific diagnostic measures (Autism Diagnostic Observation Schedule/Autism Diagnostic Observation Schedule, Second Edition; Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition/Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition). Baseline measures include demographics, autism assessment, cognitive assessment data, behavioral data, sleep habits, quality of life, sensory data, and treatments. Several of the measures are collected at annual follow-up visits.
More than 6800 children with ASD have been enrolled in the Autism Speaks ATN registry. Data from the registry have been reported at numerous scientific meetings and in several publications and have led to new recommendations for best practices in the management of ASD.
A patient registry for children and adolescents with ASD has had and will continue to have a significant impact on care for this population. Investigators are encouraged to query this database to further its impact by testing novel hypotheses and conducting preliminary proof-of-concept analyses.
患者登记系统能够在较长时间内有效收集数据，以便更好地了解特定疾病的典型表现。在过去20年中，自闭症谱系障碍（ASD）的报告患病率显著上升，原因尚不完全清楚。自闭症治疗网络（ATN）登记系统的建立是为了促进对一系列对于扩展我们对ASD理解至关重要的问题的研究。在此，我们描述该登记系统的建立、其组成部分、迄今为止的一些发现以及进一步利用这些数据的机会。
如果参与者在登记时年龄在2.0至17.6岁之间，并且符合基于特定诊断措施（《自闭症诊断观察量表/自闭症诊断观察量表第二版》；《精神疾病诊断与统计手册第四版/精神疾病诊断与统计手册第五版》）的临床共识所确定的ASD标准，则有资格加入ATN登记系统。基线测量包括人口统计学、自闭症评估、认知评估数据、行为数据、睡眠习惯、生活质量、感觉数据和治疗情况。其中一些测量在年度随访时收集。
超过6800名患有ASD的儿童已被纳入自闭症之声ATN登记系统。该登记系统的数据已在众多科学会议上报告，并发表在多篇出版物中，还为ASD管理的最佳实践带来了新的建议。
一个针对患有ASD的儿童和青少年的患者登记系统已经并将继续对这一人群的护理产生重大影响。鼓励研究人员查询该数据库，通过检验新的假设和进行初步的概念验证分析来进一步扩大其影响。
