Registryis an organized and standardized method to systematically collect observational data about specific groups of patients managed in routine clinical practice for a predetermined objective. Such data are held in a central database and typically include information on longitudinal follow-up and outcomes. Registries describe the natural history, epidemiology, and burden of a condition; capture regional or national variations in treatment and outcomes; evaluate safety and quality of care; track cost of care, assess patient, economic and provider-driven demands; and help in budgetary allocations. By impacting health care procedures, registries influence policy and thus population health.
End-stage renal disease (ESRD) and its current standard of care, renal replacement therapy (RRT - dialysis and/or kidney transplantation) result in substantial economic and societal costs. In developed countries, ESRD affects about 0.03% of the total population, but RRT costs consumes up to 3% of annual healthcare budgets. Most developed countries have renal registries that provide critical information to support the planning, delivery and evaluation of dialysis and transplantation services.
The lack of a renal registry means that there are few reliable statistics on RRT from India. Governments are currently unaware how many of their citizens are dying of advanced kidney failure. The impact of dialysis (where services are available) on outcomes and cost of care is not known.
As the country prepares to roll out the National Dialysis Program, a window of opportunity offers itself to embed a Registry Framework in the system with minimal effort and cost. This will require ensuring a computer on site with occasional internet access. This should be part of setting up the center. Training and management of staff can be done remotely using IT tools.
Purpose and scope of this initiative – To generate information on the prevalence, incidence and causes of ESRD in patients on RRT and information on treatments and outcomes by collecting well-defined epidemiological data over many years.
Who will be included – All patients who receive dialysis for ESRD.
What data will be recorded – Core items related to patient demographics, disease, treatment, cost of careand outcome will be collected using a web based data entry portal for the lifetime of the registry. There will be provision for collecting additional items of time-limited interest. This process will be supported by defining a data dictionary, and SOPs for collecting and cleaning data and ensuring quality.
Documentation and Policies – Documentation will be developed on the management structure, a description of inclusion or exclusion criteria, a data dictionary, documentation guiding the data collection and processing, data access policy, confidentiality and ethics.
Dissemination of findings – annual reports, presentations at academic meetings, media releases, publications in medical journals and the release of datasets.
This project is funded by a research grant from the Indian Council of Medical Research.
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