A initiative of World NCD Federation with PGIMER Chandigarh (Department of Community Medicine and School of Public Health, Radiotherapy, Neurology, Clinical Haematology, Endocrinology, Advanced Cardiac Centre and Hospital Administration) and Chandigarh Administration. It is one of its kind of Integrated Noncommunicable disease registry in South East Asia.
NCDs are the leading cause of mortality (deaths) in the world. About 72% of all deaths in the world are due to chronic diseases during 2016 and 80% of these occurring in low- and middle-income countries, a major part of which is preventable. NCDs accounts for 61.8 percent of deaths in India. Based on available evidence cardiovascular diseases including Stroke (28 percent), cancer (8.3 percent) and diabetes (6.5 percent) are the leading cause of mortality in India. The major behavioural risk factors of chronic non-communicable diseases are unhealthy diet, sedentary lifestyle, tobacco use and alcohol which if eliminated, at least 80% of the cases of heart diseases, stroke and type-2 diabetes mellitus would be prevented.
Currently disease registries are limited to few countries and that too for selected diseases only. Cancer is perhaps the only disease that has registry in many countries. So, an integrated registry will not only promote synergy but convergence within the existing registry programs. Currently, separate registries have been set up for cancer, stroke, Young diabetes, Acute coronary artery disease in Chandigarh. This is leading to duplication of effort as well as the spending of more resources. However, there is a scope of convergence, and integration, by establishing one common registry for common NCDs by multi-tasking by staff which can be later up scales to add more diseases. Since major hospitals has all related departments, so it is possible to collect relevant information for identified diseases by staff. This approach may provide cost effective means of data collection, initiating comprehensive public health and clinical interventions for prevention and control of Noncommunicable diseases and also promote rational use of manpower, funds and integrated outreach activities.
- To establish integrated population based NCD registry focusing of common NCDs including cancer, young diabetes, stroke, acute myocardial infarction, chronic kidney diseases and RF/RHD.
- To develop web based standard recording and reporting system of cases and deaths related to cancer, young diabetes, stroke, acute myocardial infarction, chronic kidney diseases and RF/RHD which are diagnosed or confirmed on pilot basis.
- To initiate evidence based integrated public health and clinical interventions for prevention and control of NCDs in the selected population.
Innovation: Development of m-registry i.e. a paper-less data collection tool for the Integrated NCD Registry both in android and IOS version with real time data entry using a mobile based application linked to a web-based server.
Key focus areas and benefits of integration
The integrated population-based registry would mean integration in terms of:-
- Uniform reporting system for different NCDs like cancer, young diabetes, acute cardiac events, stroke, chronic kidney diseases, RF/RHD with section for each disease.
- Pooling of staff for multi-tasking and Convergence
- Common training of staff for data collection and reporting
- Common data collection tool with sub-sections for each NCD proposal.
- Better time management as there will be a single visit to collect data for each disease from hospitals and labs.
- May be cost effective as there will be pooling of operational cost.
- Identification and better management of co-morbidities.
- Integrated evidence-based public health interventions for prevention and control of the proposed NCDs as they share common behavioural risk factors like physical inactivity, unhealthy diet, tobacco and alcohol use, stress, overweight, high blood pressure, etc.
- An integrated population based registry covering six NCDs namely young diabetes, stroke, cancer, RF/RHD, chronic kidney diseases and acute cardiac events will be established which has a scope for inclusion of more NCDs in future. .
- It will help to find out the burden of major NCDs and will help in health planning and initiation of evidence-based public health and clinical interventions.
- The cost-effective analysis of integrated registry will be done as compared to isolated disease registry.
- If found feasible, then it will have the scope of replication, up scaling to national and international level in developing countries.