Indian sickle cell disease registry for surveillance and patient management: Development and implementation

Author:

Babu Bontha V.1ORCID,Sharma Yogita2ORCID,Surti Shaily B.3ORCID,Bhat Deepa4ORCID,Sridevi Parikipandla5ORCID,Ranjit Manoranjan6ORCID,Sudhakar Godi7ORCID,Sarmah Jatin8ORCID

Affiliation:

1. Division of Socio‐Behavioural & Health Systems Research Indian Council of Medical Research New Delhi India

2. Division of Socio‐Behavioural Health Systems & Implementation Research Indian Council of Medical Research New Delhi India

3. Department of Community Medicine Parul Institute of Medical Sciences and Research Parul University Vadodara India

4. Department of Anatomy JSS Medical College JSS Academy of Higher Education and Research Mysore India

5. Department of Biotechnology Indira Gandhi National Tribal University Amarkantak India

6. Indian Council of Medical Research‐Regional Medical Research Centre Bhubaneswar India

7. Department of Human Genetics Andhra University Visakhapatnam India

8. Department of Biotechnology Bodoland University Kokrajhar India

Abstract

AbstractIn India, sickle cell disease (SCD) predominantly occurs in indigenous (tribal) people, who are about 104 million. However, screening and diagnosis seldom happen. This situation necessitates developing a comprehensive SCD care model, including a registry. This paper describes the development and implementation of the Indian SCD registry (ISCDR) in six tribal‐dominated districts of India. The ISCDR was created in two components—(i) an Android‐based mobile/tablet application, (ii) a dashboard/admin panel for patients' data management and retrieval. Data capture involves two electronic case report forms (CRF), that is, the primary form (CRF‐1) and the repeat visit form (CRF‐2). CRF‐1 is completed as soon as the patient is found positive and captures the patient's information, including medical history, diagnosis, symptoms, precipitating factors, hospitalisation history and treatment received. Issues related to quality, security and data‐sharing were addressed. After the screening system was functional, ISCDR was initiated. In 12 months, data of 324 SCD patients and 1771 carriers were entered. The study demonstrates the feasibility of establishing an SCD registry in India. It collects systematic longitudinal data on SCD patients, which are essential for programme planning and management. Further, it is feasible to scale up and integrate with other health management databases.

Funder

Indian Council of Medical Research

Publisher

Wiley

Subject

Health Policy

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