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首页> 外文期刊>American journal of medical genetics, Part A >Setting a public health research agenda for Down syndrome: summary of a meeting sponsored by the Centers for Disease Control and Prevention and the National Down Syndrome Society.
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Setting a public health research agenda for Down syndrome: summary of a meeting sponsored by the Centers for Disease Control and Prevention and the National Down Syndrome Society.

机译：制定唐氏综合症的公共卫生研究议程：疾病控制与预防中心和美国全国唐氏综合症协会主办的会议摘要。

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摘要

On November 8-9, 2007, a meeting entitled "Setting a Public Health Research Agenda for Down Syndrome" was held to review current knowledge, identify gaps, and develop priorities for future public health research related to Down syndrome. Participants included experts in clinical and molecular genetics, pediatrics, cardiology, psychiatry, psychology, neuroscience, epidemiology, and public health. Participants were asked to identify key public health research questions and discuss potential strategies that could be used to address those questions. The following were identified as priority areas for future public health research: identification of risk and preventive factors for physical health and cognitive outcomes, focusing on understanding the reasons for previously recognized disparities; improved understanding of comorbid conditions, including their prevalence, clinical variability, natural history, and optimal methods for their evaluation and treatment; better characterization of the natural history of cognition, language, and behavior; identification of mental health comorbidities and of risk and protective factors for their development; identification of strategies to improve enrollment in research studies; development of strategies for conveying up-to-date information to parents and health professionals; identification of interventions to improve cognition, language, mental health, and behavior; understanding the impact of educational and social services and supports; identification of improved methods for diagnosis of and interventions for Alzheimer disease; and understanding the effects of different types of health care on outcomes. Participants strongly supported the development of population-based resources for research studies and resources useful for longitudinal studies. This agenda will be used to guide future public health research on Down syndrome.
机译：2007年11月8日至9日，召开了一次会议，会议名为“制定唐氏综合症的公共卫生研究议程”，以审查当前的知识，找出差距并为与唐氏综合症相关的未来公共卫生研究制定优先事项。参加者包括临床和分子遗传学，儿科，心脏病学，精神病学，心理学，神经科学，流行病学和公共卫生领域的专家。要求参与者确定关键的公共卫生研究问题，并讨论可用于解决这些问题的潜在策略。以下被确定为未来公共卫生研究的优先领域：识别身体健康和认知结果的风险和预防因素，重点是了解先前公认的差异的原因;加深对合并症的了解，包括其患病率，临床变异性，自然病史以及评估和治疗的最佳方法;更好地表征认知，语言和行为的自然历史;查明精神卫生合并症及其发展的风险和保护因素;确定提高研究人数的策略;制定向父母和卫生专业人员传达最新信息的策略;确定改善认知，语言，心理健康和行为的干预措施;了解教育和社会服务与支持的影响;确定用于诊断和干预阿尔茨海默氏病的改进方法;并了解不同类型的医疗保健对结果的影响。与会者坚决支持开发以人口为基础的研究资源和对纵向研究有用的资源。该议程将用于指导有关唐氏综合症的未来公共卫生研究。

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