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Establishing an Observational Cohort Database for Patient Care and Research at the Hinduja Hospital Chest Clinic
India has the largest burden of global tuberculosis (TB), accounting for one quarter of the total number of cases reported. Together with South Africa, India sees one-third of the total number of deaths from TB. Drug-resistant strains of the disease are also on the rise, with India having one of the largest increases in multi-drug resistant TB (MDR-TB) reporting in recent years (from 2011 to 2012, the number of MDR-TB cases in India quadrupled). Though less than 3% of new cases are found to have MDR-TB, it is estimated that India has the highest number of MDR-TB case among notified TB patients.
Case notification for MDR-TB is estimated to be severely underreported, in part because of the mix of public and private care. Private practices are required to notify the national program (RNTCP) of MDR cases, but this guideline is not enforced. The chest clinic at Hinduja Hospital, Mumbai, has been treating drug-susceptible TB and drug-resistant TB for many years, and recently played a significant role in identifying totally-drug-resistant TB. The chest clinic at Hinduja is unique in that it provides excellent care for all TB patients, but particularly to those with drug-resistant disease. This care has been extended to people who cannot afford private care by means of a free outpatient clinic that occurs weekly. We specifically propose objectives and analyses that will be relevant to TB in India with particular attention to MDR-TB:
- Establish an observational cohort database for the purpose of improving patient and clinical care by replacing paper charts with an electronic data capture system that will systematically record key TB program indicators.
- Retrospectively review data that is captured as part of the new surveillance system to understand the characteristics of the patient population that is seen in a private care setting with particular regard to TB drug-susceptibility patterns.
- Examine the progression of disease and TB treatment outcomes of the patients coming through a private sector clinic in India.