ANZDATA Australia and New Zealand dialysis and transplant registry ANZDATA Australia and New Zealand dialysis and transplant registry

Data Requests

  • How to
    request data
  • Data Use
  • Current
  • Attribution of

How to request data

ANZDATA Data Requests

We receive many data requests which vary in size and complexity. We encourage communication with the Registry to help us to meet your request, particularly if you have not used Registry data before or have a research project request.

These and other data collection and analysis issues should be discussed with Stephen McDonald at the Registry ( This is particularly important when assessing whether a particular question has been previously addressed.

Provided they fall within our guidelines, simple requests for tabular data are usually dealt with within 2 weeks; more complex requests may take a little longer.

Request Guidelines

Data requests will be considered within several broad headings.

Nature of request

The request should include the information sought, the usage proposed (including further analyses if appropriate) and an undertaking that the source of the data will be acknowledged. An indication of the level of the data requested should be given. (Extensive analysis of case-level data would normally be undertaken as part of a collaborative effort with the Registry.) We may also provide advice about the methods of analysis, or may suggest other sources of advice to ensure the best use is made of the data.

Currently ANZDATA does not approve data requests where they directly overlap active projects of contributors (defined as within 12 months of original supply of data).  The aim of this is to prevent unintentional duplication of analyses. In these circumstances, the working group head or executive officer will liaise with the requesting party, usually in collaboration with the original party, with a view to mediating complementary analyses. We encourage early discussion of potential projects with working group heads to identify areas for potential analysis.

Nature of requesting party

In general, requests from renal physicians, renal unit staff, charitable bodies, academic institutions, other registries and government departments are fulfilled without charge. Priority is given to requests from contributing renal units and funders. Individual hospital outcomes will usually only be released to people from that institution with the approval of the head of the contributing department. Requests from industry and other bodies are considered on a case-by-case basis, and may be subject to a processing fee.

The Registry is a collaborative effort of the Renal community in Australia and New Zealand. It is usual practice that requests for data for research would be made in conjunction with a contributing renal unit.

Ethics Approval

There is a requirement for local HREC approval for all research projects involving ANZDATA data where the analysis is performed externally. In particular, this applies to deidentified data extracts for research purposes where the analyses are performed externally to ANZDATA. Typically, these will be handled under the low and negligible risk (LNR) pathways of local HRECs, with the submission including a letter from ANZDATA outlining the ethics approval of the substantive data collection and deidentified nature of the extract. This change brings procedures into line with contemporary practice for research governance.

This letter has information for local Human Research Ethics Committees for applications relating to the use of de-identified data from the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA).

Federal Privacy Regulation

The Commonwealth Privacy Act impacts on release of some forms of data. In particular, identified individual data will not be released. (In any case this has not been the practice of the registry in the past).

Secondary release of data

Data is released to specific people for specific projects; use for other projects or release to other people is not permitted without prior ANZDATA approval.


If data from ANZDATA is the primary source for a report or publication, a copy of this should be sent to ANZDATA when published. It is a condition of use of ANZDATA that the source of the data is acknowledged, along with a statement that the analysis and interpretation are those of the author, not ANZDATA. (see Attribution of Publications on the last tab)

Data Use Guidelines

The ANZDATA Registry encourages widespread use of its data for a variety of purposes, including

  • quality assurance,
  • audit, surveys,
  • reports and
  • research projects,

and we welcome enquiries as to use and interpretation of the information we collect. An important first step is to check both the main section and Appendices of the most recent Annual Report as this contains much information.

There are specific conditions which apply to use of de-identified data extracts, summarised in the data use agreements.

ANZDATA Data Use Agreement

ANZOD Data Use Agreement

ANZDATA and ANZOD Data Use Agreement

Current Projects 2016/2017/2018

ANZDATA has currently a large number of projects underway. For further information on these and other enquiries, please contact the Registry for assistance.

Request Summary



Request Date

Differences in cause-specific cardiovascular mortality (atherosclerosis vs non-atherosclerosis) between dialysis modality (haemodialysis vs peritoneal dialysis).
Kenneth Yong
May 2018
Recurrence of MPGN following transplant.
Sajed Dheda
April 2018
Home therapies (PD and home HD) and associated determinants for patient and technique survival (ie. demographic and dialysis characteristics).
Jenny Chen
January 2018
Research into infectious mortality in transplant patients.
Samuel Chan
December 2017
A study about pancreas utilisation within Australia.
Paul Robertson
November 2017
A study about the date of onset of RRT for 31 patients with IgAN.
Judy Savige
October 2017
Research into paediatric kidney graft outcomes.
Kathy Paizis
September 2017
An analyses of TranscripTomics And Clinical data as a prediction tool for adverse allograft outcomes after Kidney transplantation.
Germaine Wong
September 2017
Set-up master linkage of ANZDATA to the Tasmanian Data Linkage Unit (TDLU).
Matthew Jose
August 2017
A study about adult patients receiving first renal transplant between 1 January 2000 and 31st December 2015.
Brian Doucet
July 2017
Case-control study of indigenous transplant recipients.
Namrata Khanal
July 2017
A study about KDPI and EPTS and organ allocation simulations.
Kathy Paizis
July 2017
Research into QUT Behavioural Research into Donation perceptions and behaviour.
Stephen Whyte
July 2017
An analyses of individual cancers after 2012 & updates for SIR and SMR for melanoma and mesothelioma.
Richard Gun
July 2017
Develop and validate an Australian version of KDRI / KDPI and of EPTS from Australian transplantation data.
Scott Campbell
July 2017
Research to describe the timing of ESKD in patients with either posterior urethral valves or renal hypoplasia/dysplaia and to explore outcomes in these patients.
Sean Kennedy
July 2017
Research into the utcome of DCD livers in comparison to DBD.
Glenda Balderson
July 2017
Analysis comparing short versus longer hours of satellite haemodialysis in the elderly.
Matthew Roberts
July 2017
A data linkage project about perioperative outcomes of maintenance dialysis patients undergoing surgery with the University of Queensland.
Dharmenaan Palamuthusingam
July 2017
A study determining incidence and prevalence of geographical relocation for patients on RRT. Follow up study will examine if geographical relocation is a risk factor for adverse events.
Hichan Hassan
June 2017
A data linkage project looking at transplantation practices for Māori in Aotearoa/New Zealand
Tania Huria
June 2017
The REDUCCTION Partnership Project aims to define the national clinical and economic burden of dialysis catheter exposure and bacteraemia in Australia at a facility level and to understand the health system costs associated with dialysis catheter exposure.
Sradha Kotwal
June 2017
A study about demographic data on renal replacement therapy in Australia for patients 85 years and older, their type of access and their causes of renal failure.
Sarah So
June 2017
HIDDEN Study - the proportion of those commencing dialysis in Aus/NZ with an “uncertain” Primary Renal Disease and have had a renal biopsy as recorded in ANZDATA
Andrew Mallett
May 2017
A study looking at late referral in New Zealand
Suetonia Palmer
May 2017
A study of mortality and graft loss after post-transplant lymphoproliferative disease
Anna Francis
May 2017
Pre-conception renal functions and longer term graft functions
Shilpa Jesudason
April 2017
Preclampsia in pregnancies after kidney transplantation
Shilpa Jesudason
April 2017
Association between type 2 diabetes mellitus with and without nephropathy and outcomes.
Wai Lim
April 2017
To describe the pregnancy rate in women following SPK transplantation in women with Type 1 diabetes and ESKD
Shilpa Jesudason
April 2017
A study of post operative kidney function in living kidney donors.
Robert Ellis
March 2017
Trends in donors from hypoxic brain injuries, in particular, donation from hanging victims (Code 52)
Megan Fletcher
March 2017
Calcium and phosphate levels in dialysis patients
Nigel Toussaint
March 2017
Investigation into deaths due to infection for people on renal replacement.
Matthew Jose
March 2017
Research evaluating the outcomes of Acinetobacter peritonitis in Australia.
David Johnson
March 2017
Research investigating obesity as a barrier to renal transplantion.
Dev Jegatheesan
March 2017
Research investigating mTOR inhibitor use in paediatric renal transplantation in Australia and New Zealand.
Gayathri Raman
February 2017
A study of renal outcomes in youth and young adult onset type 2 diabetes.
Jencia wong
February 2017
Longtitudinal analyis of HD patients to assess the effect of inflammation and endotoxemia on clinical outcomes.
Syham Dheda
February 2017
A study of gender - based differences in incidence and prevalence of ESKD
Stephen McDonald
February 2017
To identify survival trends in Australian Dialysis Population (ADP) aged 60 years+ between 1980 and 2015.
Dr Ritchie/Majid Kajbafzadeh
February 2017
To identify the information and advice  provided to PD patients in regards to swimming
Anna Lee
February 2017
To identify centre-level characters on transplant outcomes
David Johnson & Htay Htay
January 2017
To identify new cases of end stage kidney disease in the Aboriginal population.
Odette Gibson
January 2017
To study the total number of renal transplants in Australia & the number of transplants in females of childbearing age or younger say 0 - 35 years
Anne Le Nepveu
December 2016
Corynebacterium peritonitis study
December 2016
An analysis examining the interaction between duration dialysis and frequency on cardiac survival
Charlotte McKercher
November 2017
To identify trends in early acute rejection
Samantha Chu
Novemebr 2016
To study outcomes of people who ‘fail’ HHD after a time and return to centre based HD.
David Semple
November 2016
To identify the effect of ABO blood groups on patient survival in living and deceased ABO compatible renal transplants and what patient factors may impact on their outcomes.
Greg Wilson
November 2016
To identify outcomes of Patients on PD therapy in ESKD due to ADPKD
Abhijit Patekar
October 2016
TIMELY Study (Treatment modalities for the Infirm Elderly with end stage kidney disease) - A data linkage study involving a cohort of enrolled patients patients aged 75 years or over with an eGFR <15, following them them for a median of 2 years irrespective of whether they are treated with dialysis or supportive care.
Celine Foote
October 2016
To identify the dialysis modalities and outcomes in patients with a Failed Renal Allograft.
Abhijit Patekar
September 2016
To study the variability in use of Icodextrin and its effect on outcomes in Australian PD population.
Abhijit Patekar
September 2016
To analyse the live donor data in AKX with regard to renal function pre-donation by CKD-EPI and available nuclear GFR measurements, estimated post-donation single kidney GFR (corrected for split function of donated kidney) and renal function at 1 year.
Paolo Ferrari
August 2016
A study of the relationship of BMI to overall graft outcomes.
Sze-kit Yuen
August 2016
A study of the variability in the monthly count of organ donors.
Stephen McDonald
August 2016
A study of health and wealth in children and adolescents with Chronic Kidney Disease.
Germaine Wong / Meredith Medway
August 2016
SAFEBOD study - a data linkage study examining organ donors and recipients to develop clearer estimates of cancer and infectious disease transmissibility from better understanding of transmission and non-transmission events.
Brenda Rosales
August 2016
A study on time-to-event mixed effect modelling to examine the longitudinal impact of immunosuppression regimens and dosing on clinical outcome.
Frank Ierino / David Metz
August 2016
To determine whether distance/travel time influence treatment choices/access.
Stephen McDonald
To identify survival trends in the Australian Dialysis Population (ADP) aged 60 years+ between 1980 and 2015
Angus Ritchie / Majid Kajbafzadeh
To study all-cause and cause specific survival in patients with end stage kidney disease.
Germaine Wong / Wai Lim
To identify DBD (ECD) population for kidney donation.
Emma Proudfoot
July 2016
Recurrent GN
Germaine Wong
June 2016
To identify patient and centre factors associated with initiating haemodialysis with an AVF compared with other access types in Australia and New Zealand.
Andrea Viecelli
June 2016
To study trends in long-term kidney graft survival outcomes.
Sunil Badve
June 2016

To identify the risk factors for delayed graft function in living kidney donor transplant and association of DGF with rejection risk at 6 month, graft function at 12 months, graft and patient survival.

Manahour Mogulla


May 2016

Weight change trajectories in Indigenous Australians after renal transplantation

James Collett


Mar 2016

The DETECT Study looks at prevalence, treatment effectiveness, incremental cost, health outcomes and benefits of Colorectal Cancer Screening in Chronic Kidney Disease patients. It is a diagnostic test accuracy study for the test performance characteristics of immunochemical faecal occult blood testing in people with reduced kidney function.

Germaine Wong


Apr 2016

Establishing the effect of age at first transplant on cancer risk and time to cancer

Anna Francis


Apr 2016

Trends observed in the patterns and predictors of early mortality in adult dialysis patients, within 90 days of dialysis initiation.

John Agar


Apr 2016

A study to evaluate the variability in the rate and causes of technique failure between centres and over time and identify the association between centre characteristic and the various causes of technique failure.

David Johnson


Apr 2016

The linkage of ANZDATA and NJRR on dialysis patients requiring joint replacements.
Ian Harris
Apr 2016

A study to examine the variability in peritoneal dialysis-related peritonitis outcomes between centres and over time and will evaluate the association between centre-related factors and peritonitis outcomes. 

David Johnson


Apr 2016

The outcome of obesity in patients on peritoneal dialysis in Australia and New Zealand.
Rajiv Juneja
Apr 2016

An Investigation into the current utilisation practices of high KDPI kidneys (0.80-1.00) in Australia and an attempt to identify procurement factors and recipient characteristics associated with both poor and good outcomes in these grafts.

Emma Tully


Apr 2016

A study of the relationship between socio-economic and home haemodialysis outcomes.

Emily See


Apr 2016

The impact of donor, recipient and transplant-related factors on kidney transplant and patient outcomes in Australia:
The REnal TRansplant-related factors and Outcomes (RETRO) study.
Germaine Wong
Apr 2016

Description of the patterns and predictors of haemodiafiltration utilisation and outcomes in Australia and New Zealand over the last 15 years.

Emily See


Apr 2016

To perform simulations using existing de-identified donor data from ANZOD and recipient data from ANZDATA to derive an algorithm that can provide the most suitable approach to allocate donor kidneys to recipients taking into consideration donor and recipient quality.

Paolo Ferrari


Apr 2016

A 45 and Up Primary and Community Cohort Study aiming to explore integration of services between primary, secondary and community health care among a community-dwelling population of older residents over time and its impact on health service utilisation and health outcomes.
Rabia Khan
Apr 2016

Description of the pattern of PD peritonitis and technique failure within the first year of therapy and identification of factors predisposing to these complications.

Emily See


Apr 2016

The effect on QHealth of CPIP
Jennie Haarsager
Apr 2016
An update of request 41804 to include all Australian donors with additional data, such as donor hospital and Hepatitis B/C staus.
Janske Reiling
Apr 2016

The association between remoteness and attainment of target indicators for dialysis care among Indigenous and non-Indigenous ESKD patients.

Rathika Krishnasamy


Mar 2016

The association between socio-economic status and attainment of target indicators for dialysis care among non-Indigenous dialysis patients.

Rathika Krishnasamy


Mar 2016

Single centre cohort study investigating the association between humoral and cellular alloimmune response and graft outcomes.

Susan Wan


Mar 2016

The breakdown by Type 2 Diabetes, by age group for the year 2011 or 2012 for people on dialysis in South Australia only.
Alison Larg
Mar 2016

Assessment of the centre characteristics that are associated with higher odds of a patient receiving a living kidney donor transplant might inform the development of effective strategies to promote access to living kidney donor transplantation.

Camilla Hanson


Mar 2016

The trend in the rates, types and timing of cause-specific mortality in recipients with ESRD.

Wai Lim


Feb 2016

Indigenous PK Study
Katherine Barraclough
Feb 2016

Investigate reasons why there is little difference between referral rates and dialysis modality initiation at a single centre and what strategies can be employed for earlier detection of CKD.

Kushani Jayasinghe


Feb 2016

Incidence of Polycystic Kidney Disease in Australia
Jacqueline K Phillips
Feb 2016
Adjusted incidence rates of indigenous patients
Susan Mott
Feb 2016
The number and outcome of cases of cerebral lymphoma among transplant patients os SWRS, and how these compare with the national picture.
Kushani Jayasinghe
Feb 2016

Investigate why the risk of death-censored, overall graft loss and overall mortality is increased in recipients with disease recurrence compared to those without.

Germaine Wong


Feb 2016

Outcomes for Living kidney donors following nephrectomy in Aotearoa New Zealand: the LIVE DONATE NZ study, looking at donors rates of ESRD, death and cardiovascular disease

Michael Collins


Feb 2016

Evaluation of the patient with diabetes mellitus & ESRF for renal transplantation

David Goodman


Feb 2016

Factors associated with and outcomes of patients switching from maintenance haemodialysis to maintenance peritoneal dialysis in Australia and New Zealand

Vincent Lee


Feb 2016

To investigate the association between dietary patterns and clinical outcomes in individuals with established CKD.

Katrina Campbell


Jan 2016

To compare baseline characteristics of living kidney donors to adult recipients with living kidney donors to paediatric recipients in Australia from 2004 to 2014

Natasha Cooke


Jan 2016

Determining cost-effective dialysis models of care for indigenous Australians

Gillian Gorham


Jan 2016

Nocturnal haemodialysis and delayed graft function post-renal transplantation

Nigel Tousaint


Jan 2016

To describe the relationship between PD technique failure and SES, as determined by Socio-Economic Indices For Area ( SEIFA)

Samuel Chan


Jan 2016

Attribution of Publications

The policy on attribution of publications which incorporate ANZDATA sourced data was revised during 2002, following a period of consultation with participating physicians.

  • Where a member of a participating unit has analysed data provided by ANZDATA and subsequently prepared a manuscript, then "ANZDATA Registry" should be acknowledged as a secondary institution in addition to the author’s Hospital or University. This applies whether the primary data analysis is performed by the author or by ANZDATA staff. Where the author is an ANZDATA office holder or staff member then the primary attribution should be "ANZDATA Registry".

  • Where ANZDATA data is only a minor portion of the work, then it may be more appropriate to acknowledge the source explicitly in the "Acknowledgements" section.

In both cases the disclaimer below should be included.

"The data reported here have been supplied by the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA). The interpretation and reporting of these data are the responsibility of the Editors and in no way should be seen as an official policy or interpretation of the Australia and New Zealand Dialysis and Transplant Registry."

In all cases the source and treatment of the data should be made clear in the "Methods" section. Preferably the abstract (and keywords if applicable) should also include "ANZDATA" which would allow for searching Registry publications.

Logos for inclusion in publications or on Posters are available from the links below:

PNG file of the ANZDATA Logo
PNG file of the ANZOD Logo
PNG file of the Living Kidney Logo
PNG file of the Eye and Tissue Logo


Page last updated: 15/5/2018