Researchers wishing to include twins and/or twin data in their research can apply to access existing de-identified data (HLQ data), twin pairs to collect new data or a combination of both.
The relationship with TRA and external research projects is intended to be a collaborative one. Research teams working with TRA have access to expertise in development of recruitment strategies, setting up the recruitment phase of a project, and roll-out and management of participant recruitment. In addition, advice or assistance with grant applications, ethics applications, data management, and analysis are available on request.
All aspects of the TRA/Researcher relationship are outlined in the Working with TRA Guidelines It is recommended that you familiarise yourself with this document prior to completing an application.
The second stage of the application is the submission of a Full Application for review. The purpose of the review is to ensure projects are a) of significant scientific merit; b) an appropriate use of a twin design; and c) described so that potential participants are able to provide informed consent.
Before final approval is granted:
• an Access and Services Agreement needs to be signed and lodged with University of Melbourne;
• Human Research Ethics Approval must be in place.
Important note: all recruitment documentation, including the PLS/PISC must be developed in conjunction with Research Coordinator and Liaison prior to submission for ethics approval. Please view example recruitment documentation here.
All researchers collaborating with TRA have an ongoing responsibility to update the registry with changes to participant contact details and zygosity information.
In addition a clean copy of the dataset and any remaining biosamples must be lodged with TRA at the completion of the study or at a time negotiated between the two parties.
Use of TRA must be acknowledged in all publications and presentations. We request the following wording be used:
“This research was facilitated through access to Twins Research Australia, a national resource supported by a Centre of Research Excellence Grant (ID: 1079102), from the National Health and Medical Research Council.”