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.

罕见疾病 (RD) 给全球医疗保健系统带来了重大挑战，需要建立疾病登记处以促进研究、诊断和治疗。本文通过与印度和亚太经济合作组织 (APEC) 地区的专家互动获得的见解，探讨了印度综合性国家研发登记册的发展。强调了创建和维护国家 RD 登记所涉及的社会和技术挑战。此外，还讨论了不同利益相关者的角色和责任。此外，还讨论了 RD-RAP（注册和分析平台）框架，这是一个基于分析的 RD 注册模型，具有多利益相关者最终用户实用程序。尽管 RD-RAP 框架是为 APEC 地区制定的，但它在印度的背景下大有可为。本文讨论了与印度环境相关且适用的 RD-RAP 框架的主要特征。通过利用这些见解，本研究旨在为印度综合性国家研发注册中心的开发和运营提供宝贵的指导。