The PKD Charity has awarded £20,000 to UCL Centre for Nephrology Royal Free Hospital to fund a specialist research nurse to help develop the ADPKD and ARPKD RaDaR paediatric patient databases.
RaDaR – the National Registry of Rare Kidney Diseases – is gathering information on children and adults across the UK with a range of rare and uncommon kidney diseases, including ADPKD and ARPKD. These databases are a vital tool for researchers because they contain comprehensive information about both forms of PKD. Currently, over 5,400 ADPKD patients and 180 ARPKD patients are registered. However, the majority of those registered are adults and we know that many paediatric nephrology centres struggle to find time and staff to register children with PKD.
This grant will enable the specialist nurse to visit each centre and help with data entry. Important data to be added will include how many are affected and crucial patient, genetic, and disease characteristics.
Professor Pat Wilson, PKD Charity Research Advisory Board chair, said: “The goals are to expand and enrich the RaDaR childhood PKD database in the short and long term. Many more children with PKD will be identified and their individual conditions will be better understood. This initiative will also provide some tailored assistance to overstretched paediatric nephrology referral centres.”
Find out more about RaDaR via the link below. If you haven’t registered yourself or your child, please read/download the information leaflets and consent forms, or ask your doctor.