Lessons from the Rare Diseases Registry and Analytics Platform framework for development of a national rare diseases registry for India-Reference-Cited by-同舟云学术

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

Published:2024-02-19 Issue:1 Volume:49 Page:
ISSN:0973-7138
Container-title:Journal of Biosciences
language:en
Short-container-title:J Biosci

Author:

Chaube Pragya,Lankapalli Avani,Choudhury Mohua Chakraborty^ORCID

Funder

Department of Science and Technology

Publisher

Springer Science and Business Media LLC

Link

https://link.springer.com/content/pdf/10.1007/s12038-024-00426-x.pdf

Reference11 articles.

1. Bellgard MI, Snelling T and McGree JM 2019 RD-RAP: beyond RD patient registries, devising a comprehensive data and analytic framework. Orphanet J. Rare. Dis. 14 176

2. Best J 2020 Django and Python developers working alongside clinicians and researchers have built a new analytics platform that looks at electronic health records for 24 million people. ZDNET (https://www.zdnet.com/article/developers-and-doctors-just-built-this-giant-open-source-data-project-to-understand-the-coronavirus/)

3. Choudhury MC and Chaube P 2022 Integrating RD management in public health programs in India: exploring the potential of National Health Mission. Orphanet J. Rare Dis. 17 43

4. Choudhury MC and Saberwal G 2019 The role of patient organizations in the RD ecosystem in India: an interview based study. Orphanet J. Rare Dis. 14 117

5. Jansen-van der Weide MC, Gaasterland CMW, Roes KCB, et al. 2018 Rare disease registries: potential applications towards impact on development of new drug treatments. Orphanet J. Rare Dis. 13 154

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