2014 Annual Report highlights and new directions for the UK Renal Registry

1. 2014 Annual Report highlights and new directions for the UK Renal Registry UK Renal Registry2015 Annual Audit Meeting Dr Fergus Caskey Medical Director, UK Renal Registry

2. Setting the theme… @UKRenalRegistry

3. Outline • Core work • New dataset: PD, CKD4+ and dialysis/ Pex for AKI • Linkage • UKRDC • National Programmes • AKI • Patient participation • Research Keith Simpson Jo Partington

4. Core work

5. UKRR Dataset v4.0 PD dataset Dashboard information CKD4+ Dialysis and plasma exchange for AKI

6. Developing a PD data set

7. Dialysis for AKI 13.02.2014 Acute haemodialysis Hospital Southmead 25.03.2014 Haemodialysis Hospital Southmead

8. Plasma exchange for AKI Plasma exchange (performed in a renal unit) The example of plasma exchange for AKI “Report every dialysis or plasma exchange session for acute kidney injury to the UK Renal Registry” Sept 2014 Non-renal patient e.g. neurology or haematology Renal patient CKD e.g. HLAi or ABOi pre transplant AKI (stage 1, 2 or 3) Nephrotic e.g. FSGS Nephritic e.g. vasculitis or aHUS Green = covered by s251 permissions and mandate Orange = covered by s251 permissions but not mandated Red = not covered by mandate or s251 permissions

9. UKRR Dataset v4.0 Effective from Jan 2016 PD dataset Dashboard information CKD4+ Dialysis and plasma exchange for AKI Jan 2015 in England

10. RRT incidence and prevalence

11. eGFR at start

12. Dialysis survival

13. SurvivalAdjusting for comorbidity with HES data “The addition of a combination of 16 comorbid conditions present at the start of RRT reduced the number of centres with worse than expected survival to one.” 6 outliers 4 outliers 1 outliers Fotheringham NDT 2014

14. Prevalent survival by centre • To publish or not? • Patient council • RIGB and Exec Committee • -> Must publish and escalate as before • Don’t stress variation in patient summaries this year • Use co-morbidity data where available • Work towards routine HES linkage in all 4 countries

15. Infections

16. Infections

17. PHE Infection data • MRSA, MSSA, Cdiff and E Coli – mandatory reporting • Renal flag NOT mandatory • Some patients not identified as renal • Some incorrectly identified as renal • Validation time consuming and variable Plan: • Link all UKRR data with all PHE infection data • Receive linked data set and send to renal units for validation

18. National Programmes

19. Algorithm Sub-Group SoftwareImplementation Sub-Group Hydration Sub-Group Best Practice in E-alert Group Expert Reference Group Advisory Group AKI National Programme Board NHS England Patient Safety Steering Group National Programme 1.AKI Risk Education Detection Implementation Intervention Measurement

20. meta data LABS LABS RPV LABS Renal Units Patient UK RR SRR Research and Audit UK Renal Data Collaboration RaDaR BAPN HES, RGOS etc NHSBT Primary care – prescribing etc

21. meta data LABS LABS RPV LABS Renal Units AKI data Primary and secondary care Direct from labs Patient UK RR SRR Research and Audit UK Renal Data Collaboration RaDaR BAPN HES, RGOS etc NHSBT Primary care – prescribing etc

22. National algorithm and mandate to report By 9th March 2015

23. Research

24. Research Study Groups • Dialysis: chair Simon Davies • Transplant: chair Iain McPhee • CKD: incorporated into UKKRC SG • Research methods: chair Fergus Caskey • Patient council: chair Fiona Loud Research fellows • Retha Steenkamp PhD awarded • Tony Wing fellow (BKPA & KRUK) – Alex Hamilton – commenced • Current PhD fellows • Rishi Pruthi (ATTOM) • Catriona Shaw (MINAP) • Ani Rao (EQUAL) • New ACF call • Non-clinical fellows (doctoral/ pot-doctoral) adverts

25. Late referral (2012/2013) 30% 5% Chapter 1. UKRR Annual Report 2014

26. ASSIST CKD Michael Nation at KRUK Hugh Gallagher at St Heliers Scaling up Hugh Rayner’s work at Birmingham Heartlands • eGFR graph generated in high risk patient in labs • Sent to GP with information • Aim to reduce late referral • Stepped wedge roll out to gather evidence of effectiveness (or not) In collaboration with Prof Stephen Walters in ScHARR and Dr Erik Lenguerrand at UoB

27. Research: grants awarded • Health Foundation • ASSIST-CKD (St Heliers with KRUK) • AKI Care Bundle (Derby) • NIHR HTA • SIMPLIFIED (Cambridge) • NIHR RfPB • UK PDOPPS-catheter (Sheffield) • Other • NIHR HS&DR (ICNARC) • NIHR HTA (Oxford) • NIHR SBRI D4D x2 (UKRR and Atlantis HC) Stepped wedge CRCT Registry RCT IV analysis

28. Acknowledgements CROSS TALK IN RENAL EPIDEMIOLOGY UKRR & ERA-EDTA Registry Thursday 28th May, London 13:15 – 16:45 1. Selection bias in renal research2. Missing data 3. Linkage to achieve big data 4. IV analysis5. Propensity scores6. Time dependent confounding Thank you to all the UK renal centres for providing data to the UK Renal Registry. And thank you to all those who contributed to the writing of the 2014 annual report or participated in the Registry’s National Programme initiatives and Study Groups! www.renalreg.com @UKRenalRegistry