ANZDATA Session, ANZSN 2015 Matthew JoseStock, flow and direction Kevan Polkinghorne Dialysis modality and survival Namrata Khanal Indigenous transplantation Wai Lim Accuracy and utility of ANZDATA registry in kidney transplantation Stephen McDonald Mythbusters

Stock and Flow

Dialysis 13,945 Dialysis 13,945 Transplant 10,785 Transplant 10,785 RRT AUS & NZ - Dec 2012 RRT Dec ,730 RRT Dec ,730

Dialysis 13,945 Dialysis 13,945 Transplant 10,785 Transplant 10,785 RRT AUS & NZ 2012 to ,094 new starts 105 pre-emptive Tx 3.2% 2,989 new dialysis 96.8%

Dialysis 13, ,236 – 897 Dialysis 13, ,236 – 897 Transplant 10, – 247 Transplant 10, – 247 3,094 new starts 105 pre-emptive Tx 2,989 new dialysis RRT AUS & NZ 2012 to Graft fail 892 Tx from dialysis

256 deceased Tx recipients 1,860 death on dialysis Dialysis 13, ,236 – 897 – 1,860 Dialysis 13, ,236 – 897 – 1,860 Transplant 10, – 256 – 247 Transplant 10, – 256 – 247 3,094 new starts 2,116 deaths 105 pre-emptive Tx 2,989 new dialysis 892 Tx from dialysis RRT AUS & NZ 2012 to Graft fail

Dialysis 14,424 Dialysis 14,424 Transplant 11,279 Transplant 11,279 3,094 new starts 2,166 Deaths RRT , % RRT , % RRT AUS & NZ pre-emptive Tx 2,989 new dialysis 892 Tx from dialysis 247 Graft fail 256 deceased Tx recipients 1,860 deceased dialysis pts

ANZDATA Registry Annual Report 2014

ANZDATA reports

Data requests

Performance Indicators – HD & PD

Publically available: Identified hospital report - Dialysis

Publically available: Identified hospital report- Transplant

Consumer summary

Aims: Annual Report Earlier, betterPhil Clayton Real-time data Efficiency, accuracy Kylie Hurst KPI, stock and flowStephen McDonald Identified data Key dialysis and transplant outcomes – website Methods: FundingAOTA, NZ Department of Health, KHA, ANZSN, Amgen Hardware New interfaces, new database – 80% there New People Data team: Kylie Hurst, IT Maneesha Kandamby

Data collection QOL, PROMs, PREMs Social determinants Unit-level characteristics ResearchRegistry-based clinical trials

Data returns from units 2015

Realtime activity notification Notification of key events in real time is improving, but still <100%

Do you have and use (FOR ALL DIALYSIS PATIENTS) an Electronic Health Record for: Laboratory Results ? A.Yes B.No

Do you have and use (FOR ALL DIALYSIS PATIENTS) an Electronic Health Records for : : Clinical information (comorbidities, smoking)? A.Yes B.No

Working groupMangerMembers CancerGermaine Wong Jonathon Craig (NEWC), Angela Webster (WEST) Rob Carroll (CNAR), Shlomo Cohney (EPWT) Philip Clayton (ANZDATA) HaemodialysisKevan Polkinghorne Mark Marshall (MIDM), Richard Allen (RPAH - Surgeon), Rowan Walker (ALFD), Vincent Lee (WEST), Stephen McDonald (ANZDATA) Indigenous Jaqui Hughes (AU) Suetonia Palmer (NZ) Donisha Duff (KHA), Paul Lawton (NT), Katherine Barraclough (RMBH), Siah Kim (NEWC), Johan Rosman (WA), Greg Perry (RLPT), Namrata Khanal (ANZDATA), Phil Clayton (ANZDATA) PeadiatricSean Kennedy Lil Johnstone (MMCP), Mandy Walker (RCHL), Peter Trnka (CARS), Tonya Kara (STAR), Anne Durkan (AUCK), Amelia Le Page (NEWC), Phil Clayton (ANZDATA) Peritoneal DialysisNeil Boudeville David Johnson (PSAH), Sunil Badve (PSAH), Kamal Sud (NEPN), Monique Borlace (CNAR), Philip Clayton (ANZDATA), Stephen McDonald (ANZDATA) TransplantWai Lim Helen Pilmore (AUCK), Paolo Ferrari (NSW), Peter Hughes (EPWT), Kate Wyburn (NSW), Steven Chadban (RPAH), Philip Clayton (ANZDATA), Stephen McDonald (ANZDATA)

Units – patients, doctors, nurses, allied Data and time Interest and attendance Enquiries - >2000 per annum Feedback Funders: Australian & NZ Governments, KHA, ANZSN, Amgen, pharma ANZSN ANZDATA stand, ANZDATA Session Workers within ANZDATA Executive, Office, Steering Committee and Working Groups