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

Chaube, P and Lankapalli, A and Choudhury, MC (2024) Lessons from the Rare Diseases Registry and Analytics Platform framework for development of a national rare diseases registry for India. In: Journal of Biosciences, 49 (1).

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Abstract

Rare diseases (RD) pose significant challenges for healthcare systems globally, necessitating the establishment of disease registries to facilitate research, diagnosis, and treatment. 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. © Indian Academy of Sciences 2024.

Item Type:	Journal Article
Publication:	Journal of Biosciences
Publisher:	Springer
Additional Information:	The copyright for this article belongs to the Springer. .
Keywords:	Asian Pacific Economic Cooperation Forum; disease; expert system; record; research work; stakeholder, Article; disease registry; health care; human; India; low income country; middle income country; panel study; practice guideline; rare disease; social responsibility; stakeholder engagement; article; drug development; epidemiology; health care system; newborn, India, Asia; Humans; India; Rare Diseases; Registries
Department/Centre:	Others
Date Deposited:	23 Apr 2024 07:14
Last Modified:	23 Apr 2024 07:14
URI:	https://eprints.iisc.ac.in/id/eprint/84667

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