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: 10413274
• 负责人: Claire D. Coles
• 金额: $ 4.78万
• 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/10413274
• 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.

摘要 最近的流行病学研究表明，胎儿酒精谱系障碍（FASD）可能有 人群中的患病率高达5%（May等人，2014年）;然而， 没有公认的治疗方案，因为尽管几十年来， 研究产前酒精暴露（PAE）的影响，对FASD成年人的科学研究 几乎是未知的。这种缺乏准确信息的情况对这些人来说是毁灭性的， 家庭和专业人士谁遇到受影响的个人沮丧的来源。 尽管神经发育缺陷可能是持续的，但没有关于 与PAE相关的精神和身体健康问题、护理人员、医疗保健专业人员 政策制定者无法做出明智的决定，准确诊断，提供护理， 分配资源。目前的项目得到了国际家庭发展研究中心提供的资源支持， 唯一有资格解决这一赤字，并执行以下具体目标：1）建立一个 500名年龄大于30岁的已知酒精暴露/FASD患者的登记研究 诊断或谁是匹配的对照谁将响应健康调查，谁将是 可用于未来的研究; 2）在受影响的个体（FAS或FASD）和对照组（120例， 亚特兰大和120名来自西雅图），以深入评估支持成年人的地区的现状 身体和社会功能，目的是完善该年龄段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 活动将包括检查畸形，提取医疗记录，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。