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
    Agreements
  • Current
    Projects
  • Attribution of
    Publications

How to request data


ANZDATA Data Requests

** The 2017 ANZSN ASM will be held in Darwin from 4th-6th September 2017 with a closing date for abstract submissions of 19th April 2017. The registry receives a high volume of requests in the run up to this event. We recommend that all data requests for abstracts be summited as soon as possible and regret that requests received after 5th April 2017 may not be completed prior to the abstract closing date.word

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 or Graeme Russ at the Registry (requests@anzdata.org.au). 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.

Federal Privacy Regulation

The recent 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.

Acknowledgement

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

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

Requestor

RequestID

Request Date

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
42188
May 2017
A study looking at late referral in New Zealand
Suetonia Palmer
42183
May 2017
A study of mortality and graft loss after post-transplant lymphoproliferative disease
Anna Francis
42179
May 2017
Pre-conception renal functions and longer term graft functions
Shilpa Jesudason
42176
April 2017
Preclampsia in pregnancies after kidney transplantation
Shilpa Jesudason
42175
April 2017
Association between type 2 diabetes mellitus with and without nephropathy and outcomes.
Wai Lim
42158
April 2017
To describe the pregnancy rate in women following SPK transplantation in women with Type 1 diabetes and ESKD
Shilpa Jesudason
42156
April 2017
A study of post operative kidney function in living kidney donors.
Robert Ellis
42150
March 2017
Trends in donors from hypoxic brain injuries, in particular, donation from hanging victims (Code 52)
Megan Fletcher
42141
March 2017
Calcium and phosphate levels in dialysis patients
Nigel Toussaint
42140
March 2017
Investigation into deaths due to infection for people on renal replacement.
Matthew Jose
42135
March 2017
Research evaluating the outcomes of Acinetobacter peritonitis in Australia.
David Johnson
42131
March 2017
Research investigating obesity as a barrier to renal transplantion.
Dev Jegatheesan
42128
March 2017
Research investigating mTOR inhibitor use in paediatric renal transplantation in Australia and New Zealand.
Gayathri Raman
42125
February 2017
A study of renal outcomes in youth and young adult onset type 2 diabetes.
Jencia wong
42121
February 2017
Longtitudinal analyis of HD patients to assess the effect of inflammation and endotoxemia on clinical outcomes.
Syham Dheda
42119
February 2017
A study of gender - based differences in incidence and prevalence of ESKD
Stephen McDonald
42116
February 2017
To identify survival trends in Australian Dialysis Population (ADP) aged 60 years+ between 1980 and 2015.
Dr Ritchie/Majid Kajbafzadeh
42112
February 2017
To identify the information and advice  provided to PD patients in regards to swimming
Anna Lee
42109
February 2017
To identify centre-level characters on transplant outcomes
David Johnson & Htay Htay
42100
January 2017
To identify new cases of end stage kidney disease in the Aboriginal population.
Odette Gibson
42088
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
42087
December 2016
Corynebacterium peritonitis study
HtayHtay
42084
December 2016
An analysis examining the interaction between duration dialysis and frequency on cardiac survival
Charlotte McKercher
42075
November 2017
To identify trends in early acute rejection
Samantha Chu
42068
Novemebr 2016
To study outcomes of people who ‘fail’ HHD after a time and return to centre based HD.
David Semple
42060
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
42058
November 2016
To identify outcomes of Patients on PD therapy in ESKD due to ADPKD
Abhijit Patekar
42070
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
42073
October 2016
To identify the dialysis modalities and outcomes in patients with a Failed Renal Allograft.
Abhijit Patekar
42028
September 2016
To study the variability in use of Icodextrin and its effect on outcomes in Australian PD population.
Abhijit Patekar
42027
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
42000
August 2016
A study of the relationship of BMI to overall graft outcomes.
Sze-kit Yuen
42014
August 2016
A study of the variability in the monthly count of organ donors.
Stephen McDonald
42009
August 2016
A study of health and wealth in children and adolescents with Chronic Kidney Disease.
Germaine Wong / Meredith Medway
42005
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
42004
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
41997
August 2016
To determine whether distance/travel time influence treatment choices/access.
Stephen McDonald
41985
July2016
To identify survival trends in the Australian Dialysis Population (ADP) aged 60 years+ between 1980 and 2015
Angus Ritchie / Majid Kajbafzadeh
41984
July2016
To study all-cause and cause specific survival in patients with end stage kidney disease.
Germaine Wong / Wai Lim
41980
July2016
To identify DBD (ECD) population for kidney donation.
Emma Proudfoot
41973
July 2016
Recurrent GN
Germaine Wong
41979
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
41961
June 2016
To study trends in long-term kidney graft survival outcomes.
Sunil Badve
41958
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

41954

May 2016

Weight change trajectories in Indigenous Australians after renal transplantation

James Collett

41950

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

41945

Apr 2016

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

Anna Francis

41942

Apr 2016

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

John Agar

41944

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

41941

Apr 2016

The linkage of ANZDATA and NJRR on dialysis patients requiring joint replacements.
Ian Harris
41940
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

41936

Apr 2016

The outcome of obesity in patients on peritoneal dialysis in Australia and New Zealand.
Rajiv Juneja
41933
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

41932

Apr 2016

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

Emily See

41929

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
41927
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

41923

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

41922

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
41919
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

41918

Apr 2016

The effect on QHealth of CPIP
Jennie Haarsager
41915
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
41896
Apr 2016

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

Rathika Krishnasamy

41907

Mar 2016

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

Rathika Krishnasamy

41906

Mar 2016

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

Susan Wan

41897

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
41896
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

41895

Mar 2016

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

Wai Lim

41889

Feb 2016

Indigenous PK Study
Katherine Barraclough
41882
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

41881

Feb 2016

Incidence of Polycystic Kidney Disease in Australia
Jacqueline K Phillips
41880
Feb 2016
Adjusted incidence rates of indigenous patients
Susan Mott
41875
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
41873
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

41872

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

41871

Feb 2016

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

David Goodman

41870

Feb 2016

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

Vincent Lee

41869

Feb 2016

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

Katrina Campbell

41865

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

41864

Jan 2016

Determining cost-effective dialysis models of care for indigenous Australians

Gillian Gorham

41861

Jan 2016

Nocturnal haemodialysis and delayed graft function post-renal transplantation

Nigel Tousaint

41859

Jan 2016

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

Samuel Chan

41856

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:

JPEG file of the ANZDATA Logo (no text)
EPS file of the ANZDATA Logo (no text)
JPEG file of the ANZDATA Logo (with text)
EPS file of the ANZDATA Logo (with text)

 

Page last updated: 28/3/2017