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

Overview • • Registry Reports Data security Renal IT / Cf. H Update on Overview • • Registry Reports Data security Renal IT / Cf. H 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 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 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 Security Issues Queries related to sending data PIAG Compliant Caldicott Guardian Encryption of data transmission PGP www. pgp. com

New renal units submitting 2007 data • Manchester Royal Infirmary • Stoke • Kent 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 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 & 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 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 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 to get on list

Lot 2 - Clinical Information Technology Service Category 2. 26 – Renal Services Approved Lot 2 - Clinical Information Technology Service Category 2. 26 – Renal Services Approved suppliers National Specialist SME British Telecom PLC Capula Healthcare Ltd File. Tek UK Ltd Clinical Computing plc Perot Systems Europe Ltd Epic Systems Corporation Siemens PLC Mediqal H I Ltd

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

Renal Assoc Web site • Data on standards achievement Renal Assoc Web site • Data on standards achievement

Take on rates Take on rates

Modalities - incident Modalities - incident

e. GFR at start -by year e. GFR at start -by year

Duration of pre RRT care Duration of pre RRT care

Growth in prevalence Growth in prevalence

Co-morbidities by ethnicity Co-morbidities by ethnicity

1 year after 90 days death rate per 1, 000 patient years by nation 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 Survival from day 0 RRT 50% survival 80 – 2 yrs 70 – 3 yrs 60 – 5 yrs 50 – 10 yrs

Survival and censoring Not censored at transplant Survival and censoring Not censored at transplant

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

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

Improvement in URR by year Improvement in URR by year

Haemoglobin in incident patients by year of start of RRT Haemoglobin in incident patients by year of start of RRT

Percentage of patients with Hb > 10 g/dl by centre 31/12/07 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 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 Other analyses • Phosphate • Transplantation

Non -Report analyses Standards and Survival on home HD • Survival benefit of 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 e. GFR prior to RRTby time since first renal referral Median e. GFR prior to RRTby time since first renal referral

Median e. GFR prior to RRTby renal unit (excludes data from late presenters) Median e. GFR prior to RRTby renal unit (excludes data from late presenters)

Median e. GFR prior to RRTby Diastolic BP at 6 months pre-RRT (excludes data Median e. GFR prior to RRTby Diastolic BP at 6 months pre-RRT (excludes data from late presenters)

Renal Data Map Atlas • Grant from Dept Health • East Midlands PHO Afzal 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 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 Other activities • Dr from Hungary on 3 month ERA grant • EU grant on data standardisation • ERA studies

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