An update fromThe UK Renal Registry
Dr Fergus CaskeyMedical Director, UK Renal Registry
Annual Informatics Meeting, September 2014
UKRR data set, v4.0
1. New data items– PD– Dashboard– CQUINs
2. Data extraction– eGFR<30– Dialysis for AKI– Plasma exchange
Data format – requirements may change
Jan 2016
Jan 2015
Commissioners
UKRR data set, v4.0
• Dialysis for AKI• Plasma exchange
– Timeline– Sessions/ activity– Outcomes/ mortality
Jan 2015
Jan 2016
UKRR accountability
National Clinical Director
Commissioners
NHS England
Patients
UKRR
Early mortality data
Early mortality data
Resolved by capturing patientsfrom first dialysis, acute or chronic
Routine linkage with HES / ONS
“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.”
Fotheringham NDT 2014
6 outliers
4 outliers
1 outliers
Routine linkage with HES and ONS
• Routine adjustment for co-morbidity in centre survival comparisons
• Research grants– PD catheter insertion– Alt day dialysis
Published 22nd September 2014
Update
core work – major projects – research
Other core work• Annual Report
– On schedule for Dec 2014 publication (2013 data)– UKRR has taken over dialysis access and infection audit in England
• Patient Council– First meeting July 2014– Chair: Fiona Loud
• Beyond ESRD– Obtained Section 251 exemption for CKD2+ and dialysis dependent AKI, 2013– Obtained Section 251 exemption for all AKI (1y and 2y care), 2014
Other major projects
• UK Renal Data Collaboration– Proof of concept completed, contract signed with InterSystems, training begun
• NHS England – UKRR AKI programme– UKRR establishing a master patient index of all AKI in primary and
secondary care
• NHS England – UKRR Patient Participation programme– PROMs PREMs PAMs: in development
Research
• Research methods Study Group– 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 started August 2014– Examining the psychosocial impact of developing ESRD adolescence and
young adulthood
• Data linkage opportunities– Revised work proposal forms on UKRR website – “working with us”– Now three levels (including no analysis input from UKRR)
ResearchRecent PhD fellows
– Dr Claire Castledine• Explaining regional variation in renal service provision in the UK• PhD awarded
– Retha Steenkamp• Multiple imputation and prognostic survival modelling• Award recommended
Current PhD fellows– 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)
– Dr Alex Hamilton• Psycho-social impact of ESRD in young adulthood (BKPA funded Tony Wing award)
• A different model in the future?
UKRRpast present and future work
HaemodialysisPeritoneal dialysis
Kidney transplantation
AKI dialysis dependent
AKI in 1y & 2y care
CKD 2-4 in 2y care
CKD 2-4 in 1y & 2 care
DemographicsCase-mixLaboratory data
PROMs & PREMsActivation & QSDM
The United Kingdom Renal Registry