1. 2013 Annual Report highlights and new directions for the Registry
Dr Fergus Caskey
Medical Director, UK Renal Registry
Good morning and thank you for the opportunity to speak this morning. As the title slide shows I am going to be talking through some of the highlights of this years annual report data
UK Renal Registry 2014 Annual Audit Meeting 1 1

2. Annual Report 2013 Published December 2013 Second report in 2013
Data up to 31st December 2012
April: extract 1st quarter
April-June: data extracts obtained & validated
July: database closed
July-August: dataset cleaned; stats performed
Sept-Nov: chapters written, edited & formatted
December: published
Second report in 2013

3. Annual Report 2013 Informatics, data management and programming
Fiona Braddon, Shaun Mannings, Fran Benoy-Deeney, Lynsey Billett, Paul Dawson, Jo Wilson, Matthew Brealey, George Swinnerton
Authors and editors†
Anna Casula, Julie Gilg, David Pitcher, Rishi Pruthi, Ani Rao, Catriona Shaw, Retha Steenkamp
Victoria Briggs, Fergus Caskey, Lisa Crowley, Andrew Davenport, Anne Dawnay, Ken Farrington, Terry Feest, Richard Fluck, Damian Fogarty, Iain McPhee, Rommel Ravanan, Paul Roderick, Manish Sinah, Martin Wilkie, Andrew Williams
Business
Ron Cullen, Hilary Doxford, Steph Shearn, Laura Woodward
† First authors and last authors

4. Terry Feest Award Dr Andrew Williams Swansea
Involved in Registry from very start (including pilot)
Helped set up the Welsh data validation exercise
Contribution to Registry Committee and Study Groups
Editorial support for annual report
Championing local high quality data

5. RRT incidence , by age
Gilg J. Chapter 1. UKRR Annual Report 2013

6. RRT incidence 1990-2012, by country
Gilg J. Chapter 1. UKRR Annual Report 2013

7. eGFR at start of RRT Restricted to centres reporting since 2003
Gilg J. Chapter 1. UKRR Annual Report 2013

8. Trends in late presentation
Restricted to centres with 75+ completeness
Gilg J. Chapter 1. UKRR Annual Report 2013

9. Late presentation in 2011/2012 32% 7% Late presentation < 90 days
Restricted to centres with 75+ completeness
Gilg J. Chapter 1. UKRR Annual Report 2013

10. Transplant wait listing prevalence by age by country
Pruthi R. Chapter 4. UKRR Annual Report 2013

11. Access to transplant (adjusted HR)
Ethnicity
Access to transplant (adjusted HR)
waiting list transplant living donor transplant
White ref ref ref
S Asian ( ) 0.74 ( ) 0.66 ( )
Black ( ) 0.66 ( ) 0.40 ( )
Udayaraj U. Chapter 6. UKRR Annual Report 2013

12. Survival Trends in 1 year after 90 day survival
Pruthi, R. Chapter 8. UKRR Annual Report 2013

13. Survival Adjusting 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
Age sex
SES, ethnicity and year of start
16 comorbs from HES
4 outliers
1 outliers
Fotheringham NDT 2014 13

14. Survival Monthly hazard of death

15. Monthly hazard of death
Survival
Monthly hazard of death

16. Survival
"The Registry now asks all nephrologists to complete the timeline as accurately as possible, recording the date of first dialysis or haemofiltration and, separately, the date on which the patient was deemed to be chronic. This will allow us to distinguish between patients who have an acute start and those whose start on RRT was planned.“ UKRR 2009

17. Dialysis Access Audit England, Wales and Northern Ireland
% PD catheter failures in 1 year by centre
Referred < 90 days
Briggs, V. Chapter 14. UKRR Annual Report 2013

18. Reported infections England only
Trends in MRSA
Funnel plot of MRSA rates
Crowley L. Chapter 15. UKRR Annual Report 2013

19. Current and new directions

20. Core work Data timeliness Data quality Renal Data Collaboration
2013 database closed end June 2014 for report published December 2014
Three sites significantly behind schedule
Data quality
Plans for fixed term appointment to establish source data verification
Sensitivity and specificity for core data items
Benchmarking
Research
Renal Data Collaboration
Proof of concept completed, contract signed with InterSystems, training begun

21. Core work Dataset Patient Council Beyond ESRD
Version 3.30 end July 2014
PD dataset
Then vascular access dataset
Patient Council
Fiona Loud agreed to chair, advertised for potential members, interviews May 2014, first meeting July 2014
Beyond ESRD
Obtained Section 251 exemption for CKD2+ and dialysis dependent AKI, June 2013
Applying for Section 251 exemption for any AKI

22. Core work Specialist Commissioning Dashboard
Asked by Specialist Commissioners to take over quarterly Dashboard data collection
Four indicators
PD peritonitis rate
Adequacy of Haemodialysis Dose
Rate of Staph Aureus bacteraemia in patients treated with chronic HD
Access to Transplant listing

23. UKRR accountability NHS England Commissioners
National Clinical Director
Patients

24. Major projects Acute Kidney Injury
Partnership with NHS England over 2 years
Six workstreams – risk, education, detection, intervention, implementation, measurement
Registry leading on measurement
Launch meeting 8th April 2014
Inclusion of Wales, Scotland and Northern Ireland

25. Major projects Patient participation
Funding awarded by NHS England (Patient Experience) Feb-March 2014
Board to be establish to oversee work around:
Patient reported outcome measures (HRQoL)
Patient reported experience measures
Patient activation measures
Quality of shared decision making
Inclusion of Wales, Scotland and Northern Ireland

26. The PROMs Pilot - DRAFT 10 sites
All dialysis patients – HD (in centre/ satellite/ home), PD
PROM/ PREM collected quarterly for 12 months
Paper vs electronic
Local versus central
PROM:
EQ-5D
POS-s renal (symptoms)
? Recovery time question (for HD)
PREM:
Scottish Renal Patient Experience Questionnaire
Translation
Qualitative evaluation
Health economic evaluation

27. PROMs – a European consensus
“Consensus meeting on collecting quality of life and patient experience data in renal registries in Europe”
ERA-EDTA Registry QUEST funded
Bristol 23rd June 2014
Delegates invited from all interested renal registries in Europe

28. UKRR past present and future work
Haemodialysis
Peritoneal dialysis
Demographics
Case-mix
Laboratory data
PROMs & PREMs
Activation & QSDM
Kidney transplantation
AKI dialysis dependent
AKI in 1y & 2y care
CKD 2-4 in 2y care
CKD 2-4 in 1y & 2 care

29. Research Research methods Study Group Appointment of Tony Wing Fellow
First meeting March 2014
Solve analytical problems from dialysis and transplant study groups
Plan high impact analyses
Appointment of Tony Wing Fellow
BKPA funded fellow appointed March 2014 to start August 2014
Data linkage opportunities
Revised work proposal forms soon on UKRR website
Now three levels (including no analysis input from UKRR)

30. Research Current PhD Students A different model in the future?
Dr Claire Castledine
Explaining regional variation in renal service provision in the UK
PhD awarded
Retha Steenkamp
Multiple imputation and prognostic survival modelling
Submitted
Dr Catriona Shaw
CKD outcomes with MINAP / NICOR linkage (London)
Dr Rishi Pruthi
Qualitative research in the ATTOM Study (Southampton)
Dr Ani Rao
Mixed methods alongside EQUAL (pre dialysis CKD in the elderly) (Bristol)
A different model in the future?

31. Any questions?