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The ATR welcomes approaches by all researchers and encourages researchers in Australia in all social science and health disciplines to understand the value of twins in research designs, and learn about twin studies as a means of understanding epidemiological and clinical problems with a genetic and environmental perspective. Results can often be generalised to the wider population.
Access is generally restricted to groups who are able to access and obtain an Australian-recognised Human Research Ethics Committee (HREC) approval, e.g. universities, research institutions, hospitals. Overseas-based researchers can access the ATR with an Australian collaborator. The ATR can assist international researcher find Australian collaborators in some cases.
Use of the ATR is governed by established guidelines and procedures developed to comply with institutional policies, privacy legislation, and community and member expectations. These allow all Australian researchers access to its service on a fair, reasonable and equitable basis.
Researchers are required to submit an Expression of Interest as early as possible when a study idea or grant application is being developed. This allows initial discussion around feasibility. The ATR can provide In Principle approval which can be referenced in funding applications. This prior consultation is strongly encouraged as an award of funding does not obligate the ATR to approve its use.
ATR staff can assist researchers writing grant applications, ethics applications, and approach and information resources for delivery to potential twin pair participants.
A full ATR Application with all supporting documentation must then be submitted by the researchers. For a step by step guide to the ATR application process please see our How to Approach the ATR about a Study page.
The decision to approve an application ultimately rests with the Registry's Chair, Director and Deputy Director. Their decision is based on a consideration of the application and other documentation supplied with it, as well as the reviewers' comments and any responses to these. The researcher is given every opportunity to address any problems that are identified as obstacles to the Registry's approval of the application. The researcher is usually expected to resolve any serious issues that have been raised by either the reviewers or the Registry to their respective satisfaction before the Registry's approval for the study will be granted.
In the event that the Director or the Deputy Director is involved in a study as a researcher, they will take no part in the approval process. If both are involved or unavailable an independent person is brought in to oversee the processing of the application.
Recruitment of study participants can commence once ATR approval and all other ethics approvals have been obtained. The initial approach to twins is handled by the ATR. Given the commitment made to twins or parents when they register that information is kept strictly confidential, and that personal details are not given out without the prior consent of the individual concerned, researchers are provided with identifying information for a particular study only if and when the informed written consent of twins (or a parent) has been obtained.
The ATR provides regular updates on the recruitment effort. If changes to the Registry’s standard reporting formats are required, the researcher is encouraged to discuss this with the ATR during the approval process. Requests to change our reporting once recruitment commences may result in delays of feeding back twins’ responses.
ATR staff work closely with researchers to ensure the best possible response rates by providing clear and consistent information about the study’s aims and requirements. However, the ATR cannot make any guarantee about the expected response rates for a study.
Researchers are required to reimburse ATR for direct costs (i.e. material and labour expenses) associated with recruitment for their individual projects on a cost-recovery basis. Over the last four years the ATR has conducted over 180 mail-outs comprising more than 80,000 letters. The rate of peer-review publications has increased steadily since foundation and in recent years has averaged about 30 per year.
When a study is completed and the data checked and cleaned, the ATR requests a copy of the data for its archives. The ATR is also working to offer the capacity to back-up biospecimen samples collected by projects in a Biobank; see below. Researchers will be able to place conditions on third party access to their data and biospecimens.
Any publications arising from projects using the facilities of the ATR should acknowledge the ATR. We ask for the following wording:
“This research was facilitated with access to the Australian Twin Registry, a national research resource supported by an Enabling Grant (ID 310667) from the National Health & Medical Research Council, and administered by The University of Melbourne.”
Two reprints of all publications that result from a study must be sent to the ATR.
If names and addresses of twins from the ATR are released in confidence to an investigator, he or she must guarantee that the information will be used only in accordance with the protocol approved by the ATR. In particular, no confidential information (including names and addresses) may be passed on to any third party without written approval from the ATR.
Researches are expected to forward to the ATR information concerning any changes to twins' addresses and contact details, and the results of any zygosity testing done through blood typing.
If researchers wish to approach twins for a subsequent or follow-up study, or otherwise vary the procedures in the initial protocol, standard ATR application procedures (outlined above) should be followed.
