1. UK Renal Registry Update 2010 and future plans

2. Chris Maggs Deputy Director

3. Overview Registry structure & development Registry Report Work in progress Registry strategy and plans Quality improvement Registry collaborations

4. Registry Staff Chairman Director Deputy Director Business Manager Project manager Clinical Informatics manager Statisticians IT database support Data management Secretarial support

5. Registry Office Contact info Core funding Capitation

6. Registry IT Re-written the UKRR database New hardware (Linux box) New database New language for file loading routines = New error reports Additional validations Updated for NRD IT support for new web based databases

7. New data items Pre RRT CKD 5 (at 6 sites only) Report soon Monthly extracts of lab data in quarterly data extract (+dates) Access – vascular & PD HD individual session logging

8. Registry Reports ANNUAL REPORT Commissioner specific Report Transplant specific Report to BTS

9. Renal Patient View Keith Simpson & Neil Turner continue to direct strategy and development Management moved to Bristol Registry Informatics manager handling email queries Funded £2.50 (inc VAT) per RRT patient

10. Web based Rare Disease Registries (RaDaR)

11. Renal Data Map Atlas Grant from Dept Health East Midlands PHO Afzal Chaudhry http://www.renalreg.com/interactive-maps/

15. Centre specific reporting

18. Registry Meetings 2010 Renal PatientView Conference Date to be confirmed Q2 2010 Registry Annual Audit Meeting Thursday 10 th June

19. REGISTRY 5 YEAR STRATEGY The UKRR will be the dominant organisation producing high quality information on all aspects of the treatment of adults and children with kidney disease in the UK. The UKRR will report on variations in outcomes to drive improvement in the care of patients with kidney disease.

20. 5 YEAR STRATEGY FINANCIALLY VIABLE RECEIVE DATA ON 100% OF PATIENTS ON RRT INCREASE IN NUMBERS OF RARE KIDNEY DISEASES

21. 5 YEAR STRATEGY CONTINUE TO PRODUCE ANNUAL REPORT WEB BASED QUARTERLY CENTRE- SPECIFIC STATISTICAL PROCESS CONTROL CHARTS USING QUATERLY DATA: BY 2015, QUARTERLY REPORTS TO INCLUDE MONTHLY DATA

22. 5 YEAR STRATEGY PATIENT-FACING SUMMARY REPORT FOR PATIENTS BY 2012 ANNUAL REPORT TO INCLUDE CASE MIXED ADJUSTED OUTCOME ANALYSES BY 2013

23. 5 YEAR STRATEGY BY 2015, REPORT ON: Cost of care Bacteraemia Vascular access Dialysis dose Cause of death Patient experience/outcome measures

24. UK Renal Registry Update 2010