Fetal Alcohol Spectrum Disorders in Adults: Health and Neurobehavior

成人胎儿酒精谱系障碍：健康和神经行为

• 批准号: 10166733
• 负责人: Claire D. Coles
• 金额: $ 16.07万
• 依托单位: EMORY UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-07-01 至 2022-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10166733
• 关键词: Address; Adult; Affect; Age; Age-Years; Alcohols; Anxiety; Area; Autoimmune; Behavior; Behavioral; Biological; Blood specimen; Cardiovascular system; Caregivers; Caring; Characteristics; Child; Clinical; Cognition; Collaborations; Data; Development; Diabetes Mellitus; Diagnosis; Diagnostic; Disease; Dysmorphology; Endocrine; Enrollment; Family; Fetal Alcohol Exposure; Fetal Alcohol Spectrum Disorder; Fetal alcohol effects; Frustration; Future; Goals; Health; Health Professional; Health Status; Health Surveys; Health behavior; High Prevalence; Immune; Impaired cognition; Individual; Investigation; Life; Life Cycle Stages; Measures; Medical Records; Mental Depression; Mental Health; Metabolic; Metabolic syndrome; Natural History; Neurodevelopmental Deficit; Organism; Outcome; Patient Self-Report; Pattern; Personal Satisfaction; Phenotype; Physical Function; Physiological; Physiology; Policy Maker; Population; Prevalence; Public Health; Recording of previous events; Registries; Reporting; Research; Research Personnel; Resources; Risk; Sampling; Severities; Site; Social Functioning; Socioeconomic Status; Source; Stress; Substance abuse problem; Surveys; Thyroid Gland; Treatment Protocols; Vision; Vulnerable Populations; Work; accurate diagnosis; age group; alcohol exposure; cognitive function; cohort; data sharing; disability; disorder control; epidemiology study; fetal diagnosis; fetal programming; follow-up; functional outcomes; health data; immune function; immunological status; neurobehavior; physical conditioning; prevent; resilience; social deficits; social factors; stress reactivity; substance use

Abstract Recent epidemiological studies suggest that Fetal Alcohol Spectrum Disorder (FASD) may have a prevalence of up to 5% in the population (May, et al. 2014); however, it is rarely diagnosed in adulthood and there are no recognized treatment protocols because, despite decades of research on the effects of prenatal alcohol exposure (PAE), scientific study of adults with FASD is almost unknown. This lack of accurate information is devastating for these individuals, their families and a source of frustration for professionals who encounter affected individuals. Although neurodevelopmental deficits may be persistent, without accurate information about mental and physical health problems associated with PAE, caregivers, health care professionals and policy makers cannot make informed decisions, diagnose accurately, provide care or allocate resources. Supported by the resources provided by CIFASD, the current project is uniquely qualified to address this deficit and carry out the following Specific Aims: 1) Establish a registry of 500 individuals, older than 30 years of age, with known alcohol exposure/FASD diagnosis or who are matched controls who will respond to a health survey, and who will be available for future studies; 2) in affected individuals (FAS or FASD) and controls (120 from Atlanta and 120 from Seattle), to evaluate in depth current status in areas supporting adults physical and social functioning with the goal of refining diagnostic criteria for FASD in this age group and determining the persistence and severity of disability associated with PAE. This activity will include examination of dysmorphology, abstraction of medical records, substance use (self-report and biological samples), cognition and mental health as well as social factors that might contribute to outcomes and disability status. Finally, 3) to assess immune status (in collaboration with Dr. Weinberg) and identify outcomes associated with health indicators.

抽象的 最近的流行病学研究表明，胎儿酒精谱系障碍 (FASD) 可能与 人群中的患病率高达 5%（May 等人，2014 年）；然而，它很少被诊断出来 成年后并没有公认的治疗方案，因为尽管几十年来 产前酒精暴露 (PAE) 影响的研究，对患有 FASD 的成年人的科学研究 几乎无人知晓。缺乏准确的信息对这些人、他们的 家庭和遇到受影响个人的专业人士感到沮丧的根源。 尽管神经发育缺陷可能是持续存在的，但没有关于神经发育缺陷的准确信息 与 PAE、护理人员、医疗保健专业人员相关的精神和身体健康问题 政策制定者无法做出明智的决定、准确诊断、提供护理或 分配资源。目前项目在 CIFASD 提供的资源支持下 唯一有资格解决这一缺陷并实现以下具体目标： 1) 建立一个 登记了 500 名年龄超过 30 岁、已知患有酒精暴露/胎儿酒精谱系障碍 (FASD) 的个体 诊断或谁是匹配的对照，谁将对健康调查做出回应，以及谁将接受 可用于未来的学习； 2) 在受影响的个体（FAS 或 FASD）和对照中（120 来自 亚特兰大和西雅图的 120 人），深入评估支持成年人的领域的现状 身体和社会功能，目标是完善这个年龄段 FASD 的诊断标准 组并确定与 PAE 相关的残疾的持续性和严重程度。这 活动将包括畸形检查、医疗记录摘要、物质 使用（自我报告和生物样本）、认知和心理健康以及社会因素 这可能有助于结果和残疾状况。最后，3）评估免疫状态（在 与温伯格博士合作）并确定与健康指标相关的结果。