After its successful operation of cancer registries for the last 20 years, the government has taken the plunge to start a stroke registry at Bangalore — National Centre for Disease Informatics and Research.
According to Dr. A. Nanda Kumar, the Director of the Centre, registries for cardiovascular diseases and diabetes would be started in the future.
It is pertinent to note that chronic diseases like cancer, stroke, cardiovascular diseases and diabetes are growing at an alarming rate in India, and the number of people who either die or suffer from morbidity is quite high.
Despite knowing that a number of people suffer from stroke, precise information on prevalence and incidence is lacking. The registry has been started with the sole intent of providing this vital information.
The Centre has two major objectives: “To generate reliable data on the magnitude and incidence of stroke, and to know the patterns of care in patients with stroke,” notes the NCDIR website. These objectives are expected to “generate researchable data bases and thereby lay a strong foundation for epidemiological, clinical and control research in stroke. This would be supplemented constantly and steadily.”
According to a news piece in the British Medical Journal (BMJ), “this data could be used to plan and implement future programmes on management, prevention, and rehabilitation and to monitor patterns of care for patients who have had a stroke.”
“It is a challenging task,” said Dr. Nanda Kumar. “It will take a while before we know the exact prevalence and incidence of stroke.” In the absence of such information, he refused to provide even a ballpark figure of the number of stroke patients in India.
From January 1, 2013
The registration is only for all newly diagnosed patients with stroke diagnosed on or after January 1, 2013. It is also restricted to those patients who are registered and/or diagnosed/treated in that respective institution/individual specialist. “For purposes of calculation of incidence rates, only those patients who are residents of the registry area for at least one year is required,” the website notes.
“It has been estimated that the combined annual cost to India of stroke, coronary heart disease, and diabetes will be about $54bn by 2015, about six times the $8.7bn lost through these diseases in 2005,” notes BMJ.
The Centre is just about formulating the ways of collecting population based stroke information. Yet data collection is supposed to be much simpler than other chronic diseases like cardiovascular diseases and diabetes.
“The modus operandi of collecting stroke data is quite similar to that of cancer, and hence simpler,” he said. But what makes it simpler compared with cardiovascular diseases and diabetes? “In the case of cancer, microscopic analysis is done, and in the case of stroke MRI [and] or CT is required. Hence hospitalisation or diagnostic requirement is necessary,” he said. “In the case of cardiovascular diseases or diabetes testing is easy and treatment can be started.”
The Centre has sent out letters/emails to all neurologists listed in the Neurological Association of India, radiologists practising neuroradiology, specifically those dealing with MRI or CT of the brain to detect stroke patients. It is also targeting physicians treating stroke patients and public and community health specialists. The Centre has already started receiving registrations.
The website makes it abundantly clear that the confidentiality of patients’ data will be accorded utmost priority.
“The NCDIR is the custodian of a given centre’s/individual’s data. Neither centre’s or individual’s data would be provided to another centre nor access provided,” it states. “The NCDIR–ICMR has the obvious strength of clinically neutrality and will act accordingly. Patient identity would be immediately encrypted on data entry.”