Twins Research Australia receives a copy of new and updated contact and personal information (such as your name, date of birth and zygosity) that participants provide during TRA research projects. This is for the purpose of keeping our records up to date and maintaining contact with members. Research participants who are not already TRA members can be included as a member with this information. Membership may involve contact with information about appropriate studies, TRA activities and about research findings.
TRA requests researchers provide a copy of the study material they receive from participants of TRA research projects. This information is referred to as Study Data and could include all information participants provide in questionnaires or interviews (e.g. medical history or family history). Research projects which involve the collection of samples (e.g. blood or saliva samples) can provide TRA with access to the remaining samples. Study data and samples will be a valuable resource for both current and future research.
Study data and samples provided to TRA will be available for possible use in future research. These data and samples will only be used in the future for twin health research that has been approved by an ethics committee and TRA.
Most TRA research will specifically ask participants for consent for contact, personal and study data, as well as samples to be accessed by, stored with and re-used by TRA. If you do not want information you provide to be stored and re-used, you will be able to indicate this for each study when you agree to be involved.
For research projects which don't ask for this consent, the information collected could still be of great importance to future research. TRA works with researchers of these projects to assess the value of the study information to future research. TRA endeavours to contact participants of these projects to request consent to access and re-use the information provided. Researchers can provide TRA with access to important information if participants did not originally consent for this access. This can only occur with ethical approval, for important information which could provide benefit to the health of the public and when there is low risk to participants.
If you have participated in a TRA research project and would NOT like your information to be stored and re-used in a confidential and secure manner, please call TRA on 1800 037 021. You decision to allow this information to be stored and re-used will not affect your participation in research projects or your membership with TRA.