PATIENT REGISTRIES IN INDIA – NATIONAL CANCER REGISTRY PROGRAM
Author(s)
Janodia M, Udupa N
Manipal University, Manipal, India
Presentation Documents
A patient registry is defined, by Gliklich and Dreyer, as “an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes”. In a vast country like India it is important to have patient registries in order to understand epidemiology and plan healthcare programs effectively in order to reduce morbidity and mortality, and develop a long term strategy to provide appropriate care to patients. First such registry was started in India by Indian Council of Medical Research (ICMR) in December 1981, which was a network of cancer registries across the country. This program was termed National Cancer Registry Program (NCRP). The objectives of the NCRP were to generate reliable data on magnitude and patterns of cancer, undertake epidemiological studies, provide strategies for National Cancer Control Program and Develop human resource in cancer registration and epidemiology. The data for NCRP is collected through hospital based cancer registry and population based cancer registry. The NCRP has generated invaluable human resources in cancer epidemiology and registration. The registry has provided high level data on cancer occurrence, which is used for National Cancer Control Program (NCCP). However, the notification of cancer cases by public and private hospitals, for NCRP, is not mandatory. This might lead to possibility of many cancer cases go unnoticed. A mechanism to have nodal agencies to collect and collate data from public and private hospitals as well as private nursing homes, through legislation mandating compulsory reporting of cancer cases might provide much more useful information on epidemiology, morbidity and mortality cases along with future direction for designing intervention strategies.
Conference/Value in Health Info
2015-05, ISPOR 2015, Philadelphia, PA, USA
Value in Health, Vol. 18, No. 3 (May 2015)
Code
PHP191
Topic
Health Policy & Regulatory
Disease
Oncology