Background: Every year, worldwide, an estimated 300,000 births are affected by a neural tube defect (NTD) – a serious birth defect of the brain and spine. The majority of NTDs are preventable with maternal folic acid consumption; however, many countries have no effective prevention initiatives in place due, in part, to a paucity of birth defects data. A lack of surveillance programs capturing these data has led to an under-recognition of the burden of NTDs, making it hard to justify, develop, and implement NTD prevention initiatives. There was a need for training tools that could be adapted to meet the needs of countries seeking to develop birth defects surveillance capacity.
Program background: To address this need, a Centers for Disease Control and Prevention workgroup collaborated with global partners to develop a surveillance toolkit that would serve as a technical assistance tool for surveillance program development in low and middle resource settings. The three primary components of the toolkit are a surveillance manual, a photo atlas to aid in accurately classifying birth defects, and a facilitator’s guide for train-the-trainer programs. Other components include a data collection form, online database to standardize data collection, PowerPoint presentations supporting the manual and facilitator’s guide, and a participant workbook to provide users with a practical learning tool.
Evaluation Methods and Results: Throughout the development process, the primary toolkit components were tested with approximately 50 participants of trainings held in South East Asia and Africa. The utility of the online platform as a hosting and information exchange tool was tested prior to trainings in several countries. Feedback from participants was used to revise and enhance the platform.
Conclusions: To date, the toolkit has been used in over 30 surveillance trainings in both Africa and South East Asia. As a result, 2 countries in Africa and 9 countries in South East Asia have initiated or expanded NTD surveillance and are now collecting data where none had been collected before. The toolkit has provided ministries of health and other partners with a guide for how to collect accurate and timely data in support of prevention initiatives.
Implications for research and/or practice: No other comprehensive tool exists to provide countries with information about how to accurately conduct birth defect surveillance. The online toolkit was developed in response to requests from partners and with the end-user in mind. In this way, the toolkit is relevant to the needs expressed by countries during its development and adaptable to each country’s situation. Standardized data collection forms and a database provide a way to collect data uniformly within and across countries that enhances their ability to compare data and design joint research studies. The toolkit provides a training tool for countries and a method to collect valuable data imperative for the prevention of NTDs.