Rasmussen Sonja A, Whitehead Nedra, Collier Sarah A, Frías Jaime L
National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia 30333, USA.
Am J Med Genet A. 2008 Dec 1;146A(23):2998-3010. doi: 10.1002/ajmg.a.32581.
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.
2007年11月8日至9日，召开了一次题为“制定唐氏综合征公共卫生研究议程”的会议，以回顾现有知识、找出差距，并确定未来与唐氏综合征相关的公共卫生研究重点。与会者包括临床和分子遗传学、儿科学、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。要求与会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重点领域：确定身体健康和认知结果的风险及预防因素，重点是理解先前已认识到的差异的原因；更好地了解合并症，包括其患病率、临床变异性、自然史以及评估和治疗的最佳方法；更准确地描述认知、语言和行为的自然史；确定心理健康合并症及其发生的风险和保护因素；确定提高研究参与率的策略；制定向家长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及支持的影响；确定诊断和干预阿尔茨海默病的改进方法；以及了解不同类型的医疗保健对结果的影响。与会者强烈支持为研究和纵向研究开发基于人群的资源。本议程将用于指导未来关于唐氏综合征的公共卫生研究。
