Registry Report Highlights and Insights in 2007/8 RR IT meeting 2008

1. Registry Report Highlights and Insights in 2007/8RR IT meeting 2008

2. Overview • Sites update • Data security • 2007 data cleaning issues • Work in progress • New analyses • External Collaborations • New data sets

3. New renal units submitting 2007 data • Manchester Royal Infirmary • Stoke • Kent • St Georges • Doncaster • Colchester

4. Renal units recently changed systems Cambridge (in house) Derby (Vitalpulse) Doncaster (Mediqal) Wrexham (Chi)

5. Renal units changing systems Guys (in house) Liverpool + linked units (Cybernius) Plymouth (Vitalpulse) Swansea (Vitalpulse) Cardiff Dudley Gloucester Royal Free

6. Registry Reports 2008 Nephron supplement

7. Registry Reports Commissioner /patient specific Report Transplant specific Report to BTS

8. Data Security Issues Queries related to sending data PIAG Compliant (for 2008-9) Caldicott Guardian Encryption of data transmission PGP www.pgp.com

9. 2008 Report Thanks for all the support from sites Early data checking revealed number problems Satellites linked to wrong centres Some missing patients from centres -IT Distributed numbers - OK

10. Transplant numbers 1st year received individual patient level data from all centres (except colchester) Missing all data from MRI satellite Firstly remove transplants within 2 weeks Compared this with known transplants from UKT Removed many transferred in transplants Kept transplanted abroad

11. 2008 Data Completeness Reports sent to IT managers Clinical directors

12. Non-Report analyses Standards and Survival on home HD Survival benefit of transplantation Hb and survival by year of RRT

13. Daily dialysis International study Extensive dataset UK telephone survey, 90 patients Ethics permission Obtain Hes data Comorbidity Vascular access data

14. Other new work Renal data atlas Olap cube (Online analytical processing) slice and dice, drill down, roll up pivot RRT vintage Hb

15. Son of king Olap flexible, multi-dimensional, user-driven decision support Automated discovery and normalization of dispersed, heterogeneous data sets through a pervasive metadata layer Semantic virtualization middleware, which supports on-demand, logically integrated viewing and query of data from heterogeneous, distributed data sources

16. MRSA bacteraemia 5% MRSA episodes were in patients on RRT Many were in patients with tunnelled venous catheters AVF Need better vascular access data

17. Hes data link Plans Preliminary discussion with PIAG Via SUS

18. HL7 files New Registry IS manager Work on HL7 specification DoH modelling RRT rates

19. Comorbidity / risk Complete the comorbidity screen Compute patient’s 1 year survival Use lookup tables Incorporate into local systems

20. 1 year after 90 days death rateper 1,000 patient years by nation

21. Survival from day 0 RRT 50% survival 80 – 2 yrs 70 – 3 yrs 60 – 5 yrs 50 – 10 yrs

22. Survival and censoring Not censored censored at transplant

23. Improvement in survivalby year of start, age < 65yrs

24. Improvement in survivalby year of start, age 65+ yrs

25. Co-morbidities by ethnicity

26. Take on rates

27. eGFR at start -by year

28. Duration of pre RRT care

29. Growth in prevalence

30. Haemoglobin in incident patientsby year of start of RRT

31. Transplantation

32. Transplantation Waiting list access Time to get onto the waiting list

33. % of prevalent dialysis patients on the active waiting list (on 31/21/2006, for patients aged <65 yrs)

34. % incident patients active on the waiting list within 2 years of RRT start (patients age <65 yrs)

35. Combined unit performance

36. Number of deceased donors and transplants in the UK, 1/4/1997 – 31/3/2007, and patients on the active transplant lists on 31/3/200

37. Transplant waiting list Currently only logged at transplant centres Active, temp suspended, removed, urgent, died Not sufficient to support NSF Or support new analyses Discussed in liaison with BTS

38. waiting list codes Active on; kidney list kidney list with LD workup kidney list with failing graft K-P list at this site K-P list elsewhere K + other solid organ list Pancreas after kidney list urgent kidney transplant list

39. waiting list codes Temp suspended holiday unfit working up fitness Transplanted HB deceased donor non-HB deceased donor Live Donor in EU LD outside EU DD outside EU

40. waiting list codes Removed unfit at patients request working up for LD transplant died Not listed at patients request unfit working up for LD transplant no reason

41. waiting list codes Working up for fitness Work up complete, clinically not ready for listing

42. New data items Pre RRT CKD 5 Access – vascular & PD HD individual session logging

43. Pre RRT Creatinine, Urea, Potassium, Sodium, Bicarb Hb, Ferritin Calcium, phosphate, iPTH, albumin BP, Cholesterol, HDL / LDL CRP Urate HbA1c Protein:creat, Albumin:creat

44. Pre RRT Data items at monthly time points ; -0, -1, -2, -3, -4, -5, -6, -12 Date of measurement included with each item Day 0 dependent on the timeline

45. Pre RRT Detect anomalous results 1) Day 0 serum urea <15mmol/L 2) Fall in serum urea >10mmol/L within the last 2 months 3) Rise in eGFR of >2ml/ within the last 2 months

46. Data analysis 9 pilot centres 8,800 incident RRT patients 1,500 anomalies (13%) Reviewed data from local renal systems

47. Renal systems review Pre/ post HD Bps present 36% of incorrectly excluded because: Fall in urea 2ndry to rehydration / stopping drugs -ACE Low urea due to frailty

48. Timeline issues 30% evidence of wrong date 50% previous episode of acute HD PD starters had poorly identified start dates

49. Median eGFR prior to RRT- by time since first renal referral

50. Median eGFR prior to RRT-by renal unit(excludes data from late presenters)