India dialysis outcomes registry
Aim:
Project aims at establishing of a multi-center registry of adult patients commencing chronic dialysis and following them up to document the health outcomes.
Methods:
End Stage Kidney Disease patients newly initiated on Renal Replacement Therapy ( Hemodialysis and Peritoneal Dialysis) would be invited to participate, consenting adult patients would be followed up at regular intervals to determine the key clinical outcomes and their quality of life. Socio-economic determinants and thier implact on the over all health outcomes are being evaluated.
A prospective longitudinal cohort study of dialysis outcomes on 117 patients at PGIMER, Chandigarh and Mendata Hospital in Gurgaon was conducted to evaluate the feasibility of establishing a dialysis outcomes registry. The pilot revealed that diabetes and hypertension are responsible for 27% and 26% of kidney failure. It also brought out the huge economic disparity and its impact on the patient and his/her family. Regular treatment had a positive impact on the economic well-being of the family by keeping them normal and productive but many patients were forced to give up dialysis for financial reasons.
Current status:
Based on the success of the pilot, a larger multi-centre study is currently underway across 10 states in India and to date have recruited over 750 patients with end stage renal disease receiving maintenance haemodialysis. An easy to use, secure, web-based data collection tool based on open source platforms has been developed and is being used to monitor and follow the patients for a period of two years. Data is being collected on the impact of the treatment modalities, comorbidities, socio-economic determinants and quality of life.
