Registry Report Highlights and Insights in 2007/8 User Group 2008

Overview Registry Reports Data security Renal IT / CfH Update on sites Highlights from Report New analyses Work in progress External Collaborations

Registry Reports Hard copies available as per usual CDs available to all (1 st time) 2007 not printed as NDT supplement 2008 Nephron supplement

Registry Reports Commissioner specific Report Transplant specific Report to BTS

Data Security Issues Queries related to sending data PIAG Compliant Caldicott Guardian Encryption of data transmission PGP

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

Renal units recently changed systems Cambridge (in house) Derby (vitaldata) Doncaster (mediqal) Wrexham (renalware) Swansea (vitaldata) Liverpool Gloucester

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

New data items Daily dialysis Assisted PD Transplant waiting list status Pr:Crt / LDL / CRP Phosphate binders Calcimimetics ACE / ARBs

Connecting for Health Additional Supply Capability & Capacity (ASCC) Myself, Es Will, Rob Higgins supplement existing supply capacity, enable new supply to be met through a readily available approved Framework.  enable the streamlined procurement of IT systems and services from suppliers Need £2,000,000 to get on list

Lot 2 - Clinical Information Technology Service Category 2.26 – Renal Services Approved suppliers National British Telecom PLC FileTek UK Ltd Perot Systems Europe Ltd Siemens PLC Specialist SME Capula Healthcare Ltd Clinical Computing plc Epic Systems Corporation Mediqal H I Ltd

ASCC renal =?? CCL Mediqal (& Siemens) Chi (with BT)

Renal Assoc Web site Data on standards achievement

Take on rates

Modalities - incident

eGFR at start -by year

Duration of pre RRT care

Growth in prevalence

Co-morbidities by ethnicity

1 year after 90 days death rate per 1,000 patient years by nation

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

Survival and censoring Not censored censored at transplant

Improvement in survival by year of start, age < 65yrs

Improvement in survival by year of start, age 65+ yrs

Improvement in URR by year

Haemoglobin in incident patients by year of start of RRT

Percentage of patients with Hb > 10 g/dl by centre 31/12/07

Variation in mean EPO dose with Hb achievement - HD only What are the interactions causing this variation? ? HD dose ? Age ? Comorbidity ????

Other analyses Phosphate Transplantation

Non -Report analyses Standards and Survival on home HD Survival benefit of transplantation Hb and survival by year of RRT Pre RRT care Daily Dialysis

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

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

Median eGFR prior to RRT- by Diastolic BP at 6 months pre-RRT (excludes data from late presenters)

Renal Data Map Atlas Grant from Dept Health East Midlands PHO Afzal Choudry

Registry research funded by bequest 3 Registrars studying for higher degrees (fees fully funded by bequest)

Other activities Dr from Hungary on 3 month ERA grant EU grant on data standardisation ERA studies

This is your Registry what would you like us to do? Thanks for all your hard work