ANZDATA data requests

ANZDATA 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 (click here to go to this page), as this contains much information.

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.

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.

ANZDATA data requests completed
Requests from:	Renal Units	Other Hosp. Staff	Govt.	Research	Industry	Total
2002	125	16	24	21	12	198
2003	107	5	40	42	12	206
2004	134	11	79	138	7	369
2005	113	26	48	59	4	250
2006	150	5	27	34	6	222

Time to complete tasks
	Days to complete 90% of Tasks	Percent Completed within 1 day
2002	15	74%
2003	4	80%
2004	3	86%
2005	15	71%
2006	4	80%

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.

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. 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.

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 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 would ideally 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 below)

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. 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.