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

自闭症谱系障碍：出生队列 1976-2000，流行病学和成人状况

• 批准号: 8236522
• 负责人: SLAVICA K KATUSIC
• 金额: $ 56.06万
• 依托单位: MAYO CLINIC ROCHESTER
• 依托单位国家: 美国
• 财政年份: 2012
• 资助国家: 美国
• 起止时间: 2012-02-20 至 2017-01-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8236522
• 关键词: 19 year old; 3 year old; Academic achievement; Address; Adult; Affect; Alcohols; Anesthesia procedures; Antiepileptic Agents; Asperger Syndrome; Autistic Disorder; Behavior; Behavioral Symptoms; Birth; Calendar; Caring; Centers for Disease Control and Prevention (U.S.); Child; Childhood; Classification; Clinic; Clinical; Code; Cognition; Cohort Studies; Complex; County; DSM-IV; Data; Databases; Development; Diagnosis; Diagnostic; Diagnostic and Statistical Manual; Dictionary; Discipline of obstetrics; Drug abuse; Emergency Situation; Emotional; Environmental Risk Factor; Epidemiologic Studies; Epidemiology; Etiology; Expenditure; Family; Family history of; Fathers; Financial cost; Folic Acid; Funding Opportunities; Future; Gender; Health; Healthcare; High Prevalence; Home environment; Human; Incidence; Incidence Study; Individual; Insurance; Intelligence; Intervention; Knowledge; Language; Laws; Learning; Life; Link; Longitudinal Studies; Measures; Medical; Medical Records; Memory; Mental disorders; Mothers; Natural History; Outcome; Outcomes Research; Parents; Perinatal; Pervasive Development Disorder; Pharmaceutical Preparations; Phenotype; Policies; Pregnancy; Prevalence; Primary Prevention; Prognostic Factor; Provider; Psychometrics; Public Health; Quality of life; Recording of previous events; Records; Reporting; Research; Research Infrastructure; Resource Allocation; Resources; Risk Factors; Role; Schools; Scientific Advances and Accomplishments; Services; Siblings; Societies; Source; Special Education; Specific qualifier value; Speech; Study Subject; Symptoms; Testing; Time; Treatment Cost; United States National Institutes of Health; Vaccines; abstracting; autism spectrum disorder; base; birth control; clinically relevant; cohort; cost; cost effective; design; disorder prevention; disorder subtype; early childhood; endophenotype; experience; improved; in utero; medical schools; member; phrases; population based; programs; prospective; psychologic; psychosocial; response; risk sharing; social; time use; trend

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. . PUBLIC HEALTH RELEVANCE: The human and financial costs of autism spectrum disorders (ASDs) to affected individuals, families, and society are enormous. The most recent Centers for Disease Control and Prevention estimate of the prevalence of ASDs is 1 in 110, which is more than 10-fold higher than the prevalence estimates from two decades earlier, and the Interagency Autism Coordinating Committee has described this as an emerging national health emergency. Rigorous epidemiologic and outcomes research is needed to understand this rise in prevalence and identify risk and prognostic factors, clinically relevant subtypes, and ASD-associated medical utilization and treatment costs. The medical, psychosocial, and vocational needs of affected individuals in adulthood are needed to inform primary prevention efforts, treatment, and resource allocation. This proposal takes advantage of the unique Mayo Clinic resources to provide longitudinal epidemiologic information and adult outcomes to fill critical research gaps and ultimately improve care and guide resource allocation policies.

描述（由申请人提供）：自闭症谱系障碍 (ASD) 是一种终生神经发育疾病，其病因大多未知，对受影响的个人及其家庭产生巨大影响，是一个主要的公共卫生问题。这项名为“自闭症谱系障碍：1976-2000 年出生队列、流行病学和成人状况”的提案是对 NIH 资助机会公告 (PA-10-158) 的回应，描述了一项针对 ASD 的流行病学、基于人群的大型出生队列研究。对自闭症谱系障碍（ASD）发病率及其可能的上升趋势的认识存在重大差距。 ASD 事件病例和 ASD 亚型 [自闭症 (AD)、阿斯伯格综合症 (AS) 和未明确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自闭症谱系障碍病例的成人结局的了解几乎不存在，与自闭症谱系障碍相关的医疗费用很高，但改善成本效益的医疗管理的信息却很少。缺乏一系列独特的情况，包括已经建立的基于人口的出生队列，其中包括 1976 年至 2000 年居住在明尼苏达州奥姆斯特德县的母亲所出生的所有儿童（N = 43,934），无法获得该地区每个孩子的完整、详细的学校记录。出生队列（独立学区 ISD #535 - 41 公立、私立、家庭教育），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，以确保该项目的成功完成。这项严格的流行病学研究涉及经验丰富的多学科研究团队，确认自 1976 年以来记录的 ASD 行为症状的可用性，并开发了从医疗/学校记录中提取的符合 DSM-IV-TR 标准的详细描述性短语词典（试点数据）和独特的基于人口的出生队列。 [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性的逐页审查，无论最初的学校和医疗分类如何，并将针对以下情况应用相同的统一研究标准： 37 年研究期间 ASD 事件案例识别（包括 DSM-IV-TR 标准）。我们将研究 37 年来自闭症谱系障碍（ASD）发病率的推定上升情况、某些危险因素对自闭症谱系障碍（ASD）随时间推移的发病趋势的可能作用、通过估计围产期危险因素与家族史（父母、兄弟姐妹）的精神疾病，评估成人自闭症谱系障碍的现状和结果以及成本效益的医疗管理分析。通过这种回顾性和前瞻性流行病学相结合的方法获得的知识将大大提高有关 ASD 的科学/临床知识。 。 公共卫生相关性：自闭症谱系障碍 (ASD) 给受影响的个人、家庭和社会带来巨大的人力和财务成本。美国疾病控制与预防中心最新估计 ASD 患病率为 1:11，比 20 年前的患病率估计高出 10 倍以上，机构间自闭症协调委员会将此描述为一个新兴的国家卫生紧急情况。需要进行严格的流行病学和结果研究来了解这种患病率的上升，并确定风险和预后因素、临床相关亚型以及 ASD 相关的医疗利用和治疗成本。需要了解受影响个体成年后的医疗、社会心理和职业需求，为初级预防工作、治疗和资源分配提供信息。该提案利用梅奥诊所独特的资源来提供纵向流行病学信息和成人结果，以填补关键研究空白，最终改善护理并指导资源分配政策。