Public health surveillance is defined as the ongoing and systematic collection, analysis, and interpretation of health data for public health purposes (www.cdc.gov/publichea lth101/surveillance.html). Not only does this type of data need to be ascertained in a standardized manner, it needs to be disseminated and used to reduce morbidity and mortality. With the resolution on birth defects of the 63rd session of the World Health Assembly in 2010, member states agreed to promote primary prevention and improve the health of children with congenital anomalies by developing and enhancing surveillance systems, building capacity, strengthening research, and promoting international cooperation (www.who.int/en/news-room/fact-sheets/deta il/congenital-anomalies). Lowand middle-income countries (LMICs) have very limited resources to establish public health surveillance programs, particularly those with a primary focus on congenital and developmental anomalies. It is estimated that 94% of births with severe congenital anomalies occur in LMICs (www.who.int/en/news-room/fact-sheets/detail/congenitalanomalies). While the proportion of births with congenital anomalies are much higher in LMICs when compared with high-income countries (as is mortality and morbidity), there has historically been a lack of coordinated efforts to identify these children and their families to inform local public health action and to improve clinical care. Manlongat et al. aim to close this gap by using the recently established population public health surveillance program, the Bangladesh Cerebral Palsy Register (BCPR), to identify children with two groups of conditions that have significant mortality and morbidity: cerebral palsy (CP) and major congenital anomalies. This study highlights the value of surveillance and includes components of the comprehensive framework proposed by Botto and Mastroiacovo. The framework involves merging the surveillance of rare diseases and congenital anomalies, and, as with this study, including neurodevelopmental conditions such as CP is also relevant. Additional components include: broadening the scope of surveillance to identify primary causes, disease occurrence, and health outcomes (triple surveillance); and using surveillance data not only for epidemiological purposes but to improve clinical care. The BCPR needs to be leveraged to support more complete registration for congenital anomalies surveillance and neurodevelopmental anomalies, and perhaps to include rare diseases. Collaborating with existing local programs such as micronutrient supplementation, immunization, health promotion, and education to help prevent common risk factors such as obesity and diabetes, will contribute to a concerted effort for prevention. Not all congenital anomalies and neurodevelopmental conditions respond to public health strategies as some have genetic causes. Although genetic services are limited or lacking in LMICs, they are important to identify cause, particularly in CP where genetics is now known to play a significant role in causation. Congenital anomalies and CP share common causal pathways including environmental, genetic, and multifactorial. Collaborating with experts internationally is also beneficial, as was done to establish the BCPR with support from the Cerebral Palsy Alliance Research Institute. Additional support and expertise can be sought from organizations such as the International Clearinghouse for Birth Defects Surveillance and Research, the March of Dimes, and the Centers for Disease Control and Prevention National Center for Birth Defects and Developmental Disabilities. Congenital and neurodevelopmental anomalies surveillance systems face challenges related to cost, organization, expertise, medical and political support, diagnostics, and technology. However, it is essential to identify opportunities to advance surveillance activities globally. This should include broadening the scope of surveillance to combine or include additional groups of conditions (e.g. congenital and neurodevelopmental anomalies, rare diseases) as done by the Western Australia Register for Developmental Anomalies and the National Congenital Anomaly and Rare Disease Registration Service (UK). Increasing collaboration and data usage for public health and improving clinical care needs to be prioritized. This will significantly contribute to prevention and improve the health of children with congenital and neurodevelopmental anomalies and rare diseases.

中文翻译：

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孟加拉国脑瘫登记册：监测的价值

公共卫生监测被定义为为公共卫生目的持续和系统地收集、分析和解释健康数据 (www.cdc.gov/publichea lth101/surveillance.html)。此类数据不仅需要以标准化方式确定，还需要传播并用于降低发病率和死亡率。2010 年第 63 届世界卫生大会关于出生缺陷的决议，成员国同意通过发展和加强监测系统、建设能力、加强研究和促进国际合作（www.who.int/en/news-room/fact-sheets/deta il/congenital-anomalies）。低收入和中等收入国家 (LMIC) 建立公共卫生监测计划的资源非常有限，尤其是那些主要关注先天性和发育异常的国家。据估计，有 94% 的严重先天性畸形新生儿发生在中低收入国家（www.who.int/en/news-room/fact-sheets/detail/congenitalanomalies）。虽然与高收入国家相比，中低收入国家的先天性畸形出生比例要高得多（死亡率和发病率也是如此），但历来缺乏协调一致的努力来识别这些儿童及其家庭，以告知当地公共卫生行动并改善临床护理。曼隆加特等人。旨在通过使用最近建立的人口公共卫生监测计划孟加拉国脑性麻痹登记册 (BCPR) 来缩小这一差距，确定具有显着死亡率和发病率的两组儿童：脑瘫 (CP) 和主要先天性异常。这项研究强调了监视的价值，并包括 Botto 和 Mastroiacovo 提出的综合框架的组成部分。该框架涉及合并对罕见疾病和先天性异常的监测，并且与本研究一样，包括神经发育状况（如 CP）也相关。其他组成部分包括：扩大监测范围以确定主要原因、疾病发生和健康结果（三重监测）；并将监测数据不仅用于流行病学目的，而且用于改善临床护理。需要利用 BCPR 来支持对先天性异常监测和神经发育异常进行更完整的注册，可能还包括罕见疾病。与现有的当地项目合作，如微量营养素补充、免疫、健康促进和教育，以帮助预防肥胖和糖尿病等常见风险因素，将有助于共同努力进行预防。并非所有先天性异常和神经发育状况都会对公共卫生策略做出反应，因为有些具有遗传原因。尽管中低收入国家的遗传服务有限或缺乏，但它们对于确定原因很重要，特别是在现在已知遗传在因果关系中发挥重要作用的 CP 中。先天性异常和 CP 具有共同的因果途径，包括环境、遗传和多因素。与国际专家合作也是有益的，正如在脑瘫联盟研究所的支持下建立 BCPR 所做的那样。可以从出生缺陷监测和研究国际交流中心、March of Dimes 和疾病控制和预防中心国家出生缺陷和发育障碍中心等组织寻求额外的支持和专业知识。先天性和神经发育异常监测系统面临着与成本、组织、专业知识、医疗和政治支持、诊断和技术相关的挑战。但是，必须确定在全球推进监测活动的机会。这应包括扩大监视范围以合并或包括其他条件组（例如 先天性和神经发育异常、罕见疾病），如西澳大利亚发育异常登记处和国家先天性异常和罕见病登记服务（英国）所做的那样。需要优先考虑增加公共卫生领域的协作和数据使用以及改善临床护理。这将大大有助于预防和改善患有先天性和神经发育异常以及罕见疾病的儿童的健康。