The Indian Society of Pediatric Nephrology is a group of professionals committed to the care of children with disorders of the kidneys and urinary tract. Chronic Kidney Disease (CKD) has a high morbidity and mortality, and may progress to severe renal failure (End Stage Renal Disease i.e. ESRD) requiring dialysis and transplantation. Early diagnosis and proper treatment can delay the progression of the disease. As CKD management imposes a significant resource burden on the family and society it is essential to know the prevalence / incidence of paediatric CKD which will be useful for both medical professional as well as health policy makers. Unfortunately India does not have a registry dedicated to collect data for children with CKD.
The Indian Society of Paediatric Nephrology (ISPN) CKD registry is envisaged to be a resource bank for analysis of current care pathways for children with CKD across India with the ultimate aim of suggesting means of improvement resulting in better care. It provides a focus for the collection and analysis of standardized data relating to the incidence, clinical management and outcome of renal disease among children across India. We do hope in its full form, it will not only help in improving the CKD care of children in India, but also will be a powerful advocacy tool in future health planning and resource allocation for state, central and other funding agencies.
We are hopeful that paediatric nephrologists and paediatricians across the country looking after children with kidney diseases will submit their data to this website. The registry will accept both data in electronic as well as paper forms which could be downloaded from the website. Detailed guideline for helping one to fill the forms will be available online and helpline to answer questions related to CKD registry will be provided during working hours. All the data will be anonymized and will remain the property of ISPN although all individuals submitting data will be acknowledged. Individual centres should be able to extract data for their audit / research purpose. ISPN registry committee will also be happy to accept research proposal from individuals / research groups for accessing the data.
44 centers participate in the network
47 individual members actively contribute data to the network.
705 patients have been enrolled in the ISPN Registry.