Lessons from the Rare Diseases Registry and Analytics Platform framework for development of a national rare diseases registry for India

This article explores the development of a comprehensive national RD registry for India, informed by insights gained through interactions with experts from India and the Asia-Pacific Economic Cooperation (APEC) region. The social and technological challenges involved in creating and maintaining a national RDs registry are highlighted. Moreover, the roles and responsibilities of different stakeholders are discussed. Additionally, the RD-RAP (Registry and Analytics Platform) framework is also discussed, which is an analytics-based RD registry model with multi-stakeholder end-user utility. Although developed for the APEC region, the RD-RAP framework holds promise in the Indian context. This article discusses the key features of the RD-RAP framework that are relevant and applicable to the Indian setting. By leveraging these insights, this research aimed to provide valuable guidance for the development and operation of a comprehensive national RD registry in India.PMID:38383976
Source: Journal of Biosciences - Category: Biomedical Science Authors: Source Type: research