Autism Spectrum Disorder: Birth Cohort 1976-2000, Epidemiology and Adult Status

描述（由申请人提供）：自闭症谱系障碍（ASDs）是一种终身的神经发育疾病，其病因大多未知，对患者及其家庭产生巨大影响，是一个主要的公共卫生问题。作为对NIH资助机会公告（PA-10-158）的回应，“自闭症谱系障碍：1976-2000年出生队列，流行病学和成人状态”这一提案描述了一项流行病学、基于人群的大型自闭症出生队列研究。在对ASD发病率及其可能上升趋势的认识上存在显著差距。ASD发病病例和ASD亚型[自闭症（AD）、亚斯伯格综合征（AS）和未特别说明的广泛性发育障碍（PDD-NOS）]的详细特征（表型）很少，潜在的危险因素（病因）仍然未知。关于儿童时期发现的ASD事件的成人结局的知识几乎不存在。自闭症相关的医疗费用很高，但缺乏提高医疗管理成本效益的信息。一组独特的情况，包括已经建立的以人口为基础的出生队列，其中包括1976-2000年出生的所有儿童，其母亲居住在明尼苏达州奥姆斯特德县（N=43,934），可以获得出生队列中每个孩子的完整详细的学校记录（独立学区ISD #535 - 41公立，私立，家庭教育），可以获得出生队列中每个孩子的详细医疗记录(罗切斯特流行病学项目- rep；NIH-AR30582)和奥姆斯特德县医疗保健支出和利用数据库（OCHEUD）提供了基础设施，使该项目能够顺利完成。这项严谨的流行病学研究涉及一个经验丰富的多学科研究团队，确认了自1976年以来记录的ASD行为症状的可用性，并开发了一本详细的描述性短语词典，该词典是从符合DSM-IV-TR标准的医疗/学校记录中提取的（试点数据），以及一个独特的基于人群的出生队列。[为了帮助控制特殊教育法和DSM标准的变化]该提案将对所有潜在ASD病例的医疗和学校记录进行系统的逐页审查，而不考虑最初的学校和医学分类，并将在37年的研究期间对ASD事件病例识别应用相同的统一研究标准（包括DSM- iv - tr标准）。我们将研究37年来ASD发病率的推测上升，某些风险因素对ASD随时间变化的发病率趋势的可能作用，通过估计围产期风险因素与精神疾病家族史（父母、兄弟姐妹）之间的相互作用来研究“共同风险”假说，评估成人ASD的现状和结局，以及成本效益医疗管理分析。通过这种回顾性和前瞻性流行病学方法所获得的知识将大大促进关于自闭症的科学/临床知识。

DESCRIPTION (provided by applicant): Autism Spectrum Disorders (ASDs) are lifelong neurodevelopmental conditions with mostly unknown etiology that have a huge impact on affected individuals and their families, and are a major public health concern. This proposal, "Autism Spectrum Disorder: Birth Cohort 1976-2000, Epidemiology and Adult Status," in response to NIH Funding Opportunity Announcement (PA-10-158) describes an epidemiologic, population-based, large birth cohort study of ASDs. Significant gaps exist in the knowledge of ASD incidence and its possible rising trend. Detailed characterization (phenotype) of ASD incident cases and ASD subtypes [Autistic Disorder (AD), Asperger's Syndrome (AS) and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS] is sparse, and potential risk factors (etiologies) are still unknown. Knowledge about adult outcomes of incident ASD cases identified in childhood is almost non-existent. ASD-associated medical costs are high, yet information to improve cost-effective medical management is lacking. A unique set of circumstances, including an already established population-based birth cohort of all children born 1976-2000 to mothers residing in Olmsted County, MN (N=43,934), access to complete, detailed school records for each child in the birth cohort (Independent School District ISD #535 - 41 public, private, home schooled), access to detailed medical records for every child in the birth cohort (Rochester Epidemiology Project-REP; NIH-AR30582), and the Olmsted County Healthcare Expenditure and Utilization Database (OCHEUD) provide the infrastructure to enable the successful completion of this project. This rigorous epidemiologic study involves an experienced multi-disciplinary research team, confirmation of the availability of documented behavioral symptoms of ASD from 1976 forward, with development of a detailed dictionary of descriptive phrases abstracted from medical/school records congruent with DSM-IV-TR criteria (pilot data) and a unique population-based birth cohort. [To help control for changes in special education laws and DSM criteria] this proposal will implement a systematic page by page review of medical and school records of all potential ASD cases regardless of initial school and medical classification and will apply the same uniform research criteria for ASD incident case identification (including DSM-IV-TR criteria), during the 37year study period. We will study the putative rise in incidence of ASD over 37 years, the possible role of certain risk factors on any incidence trend of ASD over time, the "shared risk" hypothesis by estimating the interaction between perinatal risk factors and family history (parents, siblings) of psychiatric disorders, assessing adult ASD current status and outcomes and cost effective medical management analyses. The knowledge achieved through this combined retrospective and prospective epidemiologic approach will substantially advance scientific/clinical knowledge about ASD. .