An update from The UK Renal Registry Dr Fergus Caskey Medical 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

Resolved by capturing patients from 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 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 22 nd 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)

Research Recent 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?

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

The United Kingdom Renal Registry