California Monitoring of Early Childhood Autism (CA-MECA)

描述（由申请人提供）： 根据CDC RFA-DD-07-007（实施监测以确定自闭症谱系障碍（ASD）的患病率），在早期儿童人群中），我们建议在加州卫生服务部（DHS）的领导下，与北方加州的Kaiser Permanente（KPNC）以及加州圣克拉拉县（SCC）的多个卫生和服务提供者合作开展CA-MECA。我们的主要目标是建立一个科学严谨的多源监测系统，以准确确定SCC中两个出生队列年（2005-2006年）幼儿（<4岁）ASD的人群患病率，SCC每年约有26，000例出生，人口非常多样化。这样做与疾病预防控制中心预防出生缺陷和发育障碍以及改善残疾人健康的目标有关。CAMECA提案有三个组成部分，反映了我们的具体目标：1）为了识别在两个目标年出生的县内可能或明确患有自闭症的幼儿（<48个月），我们将与当地的发展性残疾人区域中心，社区诊所和专业提供者合作。将提取记录以收集数据，通过专家审查确定最终监测病例状态，并描述ASD儿童的特征。将从出生证明中获得更多数据。将计算目前和出生地流行率估计数。2)为了确定监测系统中可能存在的差距，并覆盖服务不足的人群，我们将在两个儿科诊所对2006年出生的18-30个月大的儿童进行发育障碍和ASD的常规筛查，这些诊所为低收入，主要是西班牙裔人口提供服务，并进行适当的转诊进行临床评估。与监测系统连接后，我们将比较筛查亚组与2005年出生、在同一诊所就诊但未筛查的亚组的患病率，以评估总体患病率估计值的完整性，并提供西班牙裔人群更准确的患病率估计值。3)为了提高人们对自闭症评估的认识和早期转诊，我们将对普通儿科医生和其他相关社区团体进行外展和教育，并召集一个社区咨询委员会来协助我们。这两个数据收集部分包括持续的质量控制，并将评估其完整性、准确性和更广泛应用的可行性。报告将广泛分发。CA-MECA项目的数据对于获得ASD幼儿的准确计数，以跟踪随时间的变化，为受影响的儿童及其家庭计划和提供服务，发现ASD的风险因素，识别服务不足的群体以及提供信息以改善早期筛查和诊断实践将是有价值的。

DESCRIPTION (provided by applicant): In response to CDC RFA-DD-07-007 (Implementing Surveillance to Determine Prevalence of the Autism Spectrum Disorders (ASD)...in Early Childhood Populations), we propose CA-MECA, to be conducted under the leadership of the California Department of Health Services (DHS) and in partnership with Kaiser Permanente of Northern California (KPNC), and multiple health and service providers in Santa Clara County (SCC), California. Our primary goal is to establish a scientifically rigorous, multi-source surveillance system to accurately determine the population-based prevalence of ASD in young children (<4 years old) for two birth cohort years (2005-2006) in SCC, which has ~26,000 births/year and a very diverse population. Doing so is relevant to CDC's goal to prevent birth defects and developmental disabilities and improve the health of people with disabilities. There are three components to the CAMECA proposal that reflect our specific aims: 1) To identify young children (<48 months) with possible or definite autism in the county born in the two target years, we will work with the local regional center for the developmentally disabled, community clinics, and specialty providers. Records will be abstracted to collect data to determine final surveillance case status by expert review and to describe characteristics of the children with ASD. Additional data will be obtained from birth certificates. Both current and birth residence prevalence estimates will be calculated. 2) To identify possible gaps in the surveillance system and to reach an under-served segment of the population, we will conduct routine screening for developmental disabilities and ASD in 18-30 month old children born in 2006 at two pediatric clinics that serve a lower income, primarily Hispanic population, with appropriate referrals for clinical evaluation. After linkage to the surveillance system, we will compare prevalence in the screened sub-group to those born in 2005 and seen at the same clinics but not screened, to evaluate completeness of overall prevalence estimates and to provide a more accurate estimate of prevalence in a Hispanic population. 3) To increase awareness and early referrals for autism evaluations, we will conduct outreach and education to general pediatricians and other relevant community groups, assembling and convening a community advisory board to assist us. The two data collection components include on-going quality control, and will be evaluated for completeness, accuracy and feasibility of wider application. Reports will be widely distributed. Data from the CA-MECA project will be valuable for obtaining accurate counts of young children with ASD to track changes over time, to plan and deliver services for affected children and their families, to uncover risk factors for ASD, and to identify underserved groups, as well as providing information to improve early screening and diagnostic practices.