|LETTER TO THE EDITOR
|Year : 2021 | Volume
| Issue : 1 | Page : 108-109
Recommendations to successfully implement the “National Registry and Surveillance for Children and Adolescents with type 1 diabetes in India”
Santhosh Olety Sathyanarayana
Karnataka Institute of Endocrinology and Research, Bengaluru, Karnataka, India; Jayadeva Cardiology Hospital and Research Campus, Bengaluru, Karnataka, India
|Date of Submission||06-Jun-2020|
|Date of Decision||25-Jun-2020|
|Date of Acceptance||01-Jul-2020|
|Date of Web Publication||25-Dec-2020|
Dr. Santhosh Olety Sathyanarayana
Karnataka Institute of Endocrinology and Research, Bannerghatta Road, Jayanagar, 9th Block, Bengaluru 560069, Karnataka.
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Sathyanarayana SO. Recommendations to successfully implement the “National Registry and Surveillance for Children and Adolescents with type 1 diabetes in India”. J Diabetol 2021;12:108-9
There has been a rapid advancement of information technology (IT) in the area of clinical and population health data management since 2000. Although randomized control trials are the gold standard for establishing evidence for effective and best practice, a lot of interest has been laid on observational studies using health registries to determine the health needs of a population by filling the critical gaps in the evidence. Widespread adoption of electronic health records (EHRs) and expansion of patient registries create opportunities to improve patient care, population health, and advance translational research. A diabetes registry provides care givers, patients, and administrators to facilitate delivery of health care, execute evidence-based medicine to assist development of cost-effective strategies for managing type 1 diabetes (T1D), measure health outcomes of our management, and overcome fragmented care. The latest data of prevalence of T1D in Indian children are nearly three decades old, reporting between 3.7 and 26.6 per lakh of population collected among different hospital-based studies.
One of the important milestones for India with regard to diabetes registry was Indian Council of Medical Research (ICMR) launching the Registry of People with Diabetes with Young Age at Onset (YDR) in 2006. The major objectives of YDR were to understand types of youth-onset diabetes (<25 years of age), including their geographical variations within India, and to estimate the burden of diabetes complications., Estimating the incidence and prevalence of T1D in children and adolescents, the International Diabetes Federation (IDF) recommends population-based studies, high (≥90%) ascertainment level, covering a large part of the country, providing age- and sex-specific rates, and including the age ranges 0–14 and 15–19 years. It is estimated that India has 128,500 children and adolescents with diabetes as per the IDF Atlas More Details, 9th edition. Phase 1 ICMR YDR collected data for 5546 young people with diabetes, which represents <5% of estimated overall prevalence. India being a country with complex diversity, and YDR being a hospital-based registry, the estimates may not reflect the actual population burden of youth-onset diabetes in India, and thus the true ascertainment rate of the YDR has not been identified. Hence, there is a pressing need for a continuous and ongoing surveillance system, which is also acknowledged by the authors of YDR registry. One such registry is a SWEET Registry in Europe, which was established in 2008 and is a collaborative network of multinational pediatric diabetes centers integrating diabetes clinic data in the SWEET database and clinical registry. The objective of registry is to compare benchmark between centers, and also to reduce the differences in accessibility and quality of pediatric diabetes care by learning and sharing from the best performing centers. Currently, 3 centers of reference, 7 associated centers, and 15 more centers are in the process of getting SWEET certified, participating from India. The other programs and resources of note in India where T1D database is available are Changing Diabetes in Children (CDiC) program launched in 2009 by Novo Nordisk to improve care by ensuring access to essential diabetes medicines for children in the developing world and the Karnataka state type 1 diabetes mellitus (T1DM) registry with over 13 years (1995–2008) of data collection. Although these registries gave significant insight regarding T1D data, the drawbacks were that some are inactive, lack of financial sustainability, focused on a particular category of children, covers only few centers across India, and uncertainty of continuing the support for program.
Some of the recommendations to be considered and adopted to achieve a robust national registry are given below. This would need huge financial investments, planning, training, IT support, and confidence of all the care providers.
- Expand the coverage of registries to PAN India with state wise data collection reaching maximum coverage for children (<14 years) and adolescents (15–19 years) with diabetes
- Uniform digital pro forma for initial registration and 6–12 monthly entry of follow-up data, stored in a cloud-based data storage system, which could possibly overcome flaws in analytical methods of reporting centers
- Easy access to digital pro forma to all clinicians/health-care centers caring for children and adolescents with diabetes by providing unique login names and passwords
- Only core committee members centrally can access cloud data to analyze the data annually and share the reports to respective states and centers to self reflect on service performance and adopt changes for improvements
- These data can be used for advocacy and policy makers to plan requirements to meet daily demands of these children, especially underprivileged who can avail government support and improve overall quality of life for these families
Although it sounds like a complicated process, but the advancements in digital world have made it more accessible and increased in the ease in data entry. The national registry of type 1 diabetes can be achieved by collective effort, which can be facilitated through our national societies such as Indian Society of Paediatrics and Adolescent Endocrinology, Research Society for the Study of Diabetes in India, along with ICMR. There is a great need of a national level registry and continuous surveillance system for children and adolescents with type 1 diabetes.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Dreyer NA, Garner S Registries for robust evidence. JAMA 2009;302:790-1.
Prasanna Kumar KM Incidence trends for childhood type 1 diabetes in India. Indian J Endocr Metab 2015:19(Suppl S1):34-5.
Praveen PA, Madhu SV, Mohan V, Das S, Kakati S, Shah N, et al
. Registry of youth onset diabetes in India (YDR): Rationale, recruitment and current status. J Diabetes Sci Technol 2016;10:1034-41.
Praveen PA, Madhu SV, Viswanathan M, Das S, Kakati S, Shah N, et al
. Demographic and clinical profile of youth onset diabetes patients in India: Results from the baseline data of a clinic based registry of people with diabetes in India with young age at onset-[YDR-02]. Pediatr Diabetes2019;1-7. https://doi.org/10.1111/pedi.12973.
International Diabetes Federation. IDF Diabetes Atlas. 9th ed. 2019. Available from: http://www.diabetesatlas.org. [Last accessed on 2020 Jul 22].
Available from: https://www.sweet-project.org. [Last accessed on 2020 Jul 22].
Kumar P, Krishna P, Reddy SC, Gurappa M, Aravind SR, Munichoodappa C Incidence of type 1 diabetes mellitus and associated complications among children and young adults: Results from Karnataka Diabetes Registry 1995-2008. J Indian Med Assoc 2008;106:708-11.