Design and development of an at birth detection and monitoring digital system for children born with down syndrome in Rwanda

Abstract

In Rwanda, there is a pressing need to improve awareness and at Birth Detection of Down syndrome within healthcare, among parents, and within communities. Presently, there is a gap in recognizing Down syndrome symptoms in newborns, resulting in delayed assistance. To address this issue, we have undertaken the design and development of a web-based system for tracking Down syndrome. Our approach involved an extensive analysis of secondary data and the administration of questionnaires to 158 healthcare providers across diverse settings, including the Eastern province and Kigali city, with patients referred to institutions such as Centre Hospitalier de Kigali and Rwanda Military Hospital. These efforts have played a pivotal role in shaping the development of our web-based system, which focuses on at Birth Detection and monitoring of Down syndrome patients. Secondary data analysis exposed critical challenges in managing Down syndrome cases, highlighting the urgency for a digital platform. The questionnaires revealed a strong familiarity among healthcare providers with health information systems, possession of office computers and smartphones, and access to the internet within their workplaces. These findings strongly informed the design and development of our digital health system, affirming its feasibility and potential to significantly enhance care and interventions for children with Down syndrome. This study has laid the groundwork for understanding the impediments to early Down syndrome detection and monitoring within healthcare settings that transfer patients to CHUK and RMH. Based on these findings, our efficient system for at Birth Detection and monitoring of Down syndrome patients has been meticulously designed and developed, holding immense promise for the improvement of care and the facilitation of timely interventions.