Agreement to the following ‘Conditions of Use’ is required before recruitment can begin for a project:

Recitals

1. The University of Melbourne (UoM) as the operator of Register4 maintains baseline information and contact details for members willing to participate in research (the Register4 Members).
2. The Applicant is conducting research in relation to the Project and is employed, or engaged, by the Institution in relation to the Project.
3. The Applicant has successfully submitted a Register4 Application Form and has received Ethics Approval for the Project.
4. UoM agrees to make the information relating to the Register4 Members (the Identifying Information) available to the Applicant for the Project, and the Applicant and the Institution agree to the restrictions on its holding and use of such Identifying Information, on the terms and conditions set out in this Conditions of Use Agreement.

Part A:

1. UoM agrees to make the Identifying Information available to the Applicant for the Project, subject to the Institution and the Applicant complying with the terms of this Agreement.

Part B:

The Institution and Applicant agree:

1. To promptly provide UoM with the total number of Register4 Members who completed the study which forms part of the Project.

2. To respect the rights and confidentiality of Register4 Members.

3. To contact every Register4 Member who expressed interest in potentially participating in the Project within 2 weeks from the date the Applicant receives their contact details from Register4, or in another timeframe as agreed with Register4.

4. To permit UoM in its capacity as the operator of Register4 to publish approved information about the Project on the Register4 website and in communications with Register4 Members.

5. To allow Register4 and Register4 Members to contact the Applicant about the Project as specified in the Applicant’s Application for Access to Members form.

6. To retain and use Register4 Members’ personal and health information only as long as it is needed for the Project or for the length of the Project, as specified in the Register4 Application for Access to Members form or as permitted under Privacy Laws (whichever period of time is shorter). Any changes to this timeframe must be agreed in writing with Register4.

7. To only use the information provided through Register4 solely for the purposes of the Project and in accordance with this Agreement.

8. That Register4 Members’ personal or health information are not to be kept after the completion of the Project and Register4 Members are not to be approached directly to participate in other research projects that have not been approved by Register4. After completion of the Project, any further contact with Register4 Members must come through Register4.

9. That acceptance of a project by Register4 is granted only for the Project, and Identifying Information may not be used for recruitment into any other research project, register or registry. A separate application must be submitted for all future projects.

10. To only publish data and information relating to Register4 Members if such data and information has been de-identified.

11. To not disclose any personal or health information of Register4 Members to anyone outside the research team of the Applicant without Register4 and the Register4 Members 's prior written consent.

12. To collect, hold, disclose and deal with Register4 Member's information in accordance with Privacy Laws and Register4’s Privacy Policy.

13. To immediately notify UoM of any security breach that involves Register4 data, or of any circumstances that lead the Applicant and/or the Institution to believe that security of Register4 data may have been compromised.

14. To promptly provide Register4 full details of all of the Register4 Members who were contacted in relation to the Project, including information such as updated contact details, whether or not the Register4 Member participated in the Project, and notifications of any deceased members. It is the Applicant’s responsibility to arrange for and ensure their Human Research Ethics Committee provides or allows the provision of this information to Register4.

15. To promptly submit to Register4 the following reports in lay language (suitable for display on the website) for Register4 approval:
    • an annual progress report;
    • a final report on completion of the Project; and
    • an additional final report within 18 months of completion of the Project which includes an updated list of publications and presentations.

16. To provide Register4 with reasonable notice before terminating this Agreement and do all things reasonably requested by Register4 in relation to such termination (including filling out requested documentation).

17. That UoM may, in its absolute discretion, terminate this Agreement or change Register4 at any time and remove the Project from Register4.

18. To not transfer any Register4 Member's Identifying Information, or other personal or health information relating to Register4 Members collected or received in connection with the Project, without the prior written consent of UoM and the relevant Register4 Members.

19. To destroy or return the Identifying Information and other personal or health information collected or received in relation to Register4 Members in accordance with Privacy Laws and the Australian Code for the Responsible Conduct of Research, when such information is no longer permitted to be held or used under Privacy Laws or under this Agreement (including on termination or expiry of this Agreement).

20. That UoM makes no representations (including as to the accuracy or completeness) in relation to the Identifying Information on Register 4 and that the Applicant and the Institution use that Identifying Information, Register4 and Register4 services at their own risk.

21. That the Institution indemnifies UoM and its officers, employees and agents for all liability, claims and loss which they suffer arising from any one or more of the following:

    22.1   a breach by the Applicant or the Institution of this Agreement;
    
    22.2   a breach by Applicant or the Institution of any relevant law;
    
    22.3   the Applicant’s or the Institution’s use of the Identifying Information or any other Register4 Member’s personal or health information other than as expressly permitted under this Agreement; and
    
    22.4   any negligent act or omission by Applicant or the Institution or the Institution’s employees, agents or subcontractors in relation to this Agreement or the Applicant’s or the Institution’s use of the Identifying Information or any other personal or health information of Register4 Members.

22. That the above indemnity excludes any liability, claim or loss arising from the default or negligence of UoM, its officers, employees or agents (to the extent of the contribution).

23. Without limiting any clauses that by their nature survive expiry of termination of this Agreement, that the indemnities and clauses 2, 8, 12, 13, 18, 19, 20, 21, 22, 24 and 27 in this Agreement shall survive the termination of this Agreement.

24. That this Agreement is governed by and must be construed in accordance with the laws of the State of Victoria. The parties submit to the non-exclusive jurisdiction of the courts of the State of Victoria.

25. To Register4, as part of Register4 quality control, contacting Register4 Members who have participated in the Project to obtain feedback on the research process and their experience in the Project.

26. When research findings are generated as a consequence of use of Register4, to use best endeavours to make those findings and any relevant data publically available within a reasonable timeframe in language the community can understand, taking into account the Project length and publication timeframes. 

27. To not describe specific detail of Indigenous status in any research results, unless the Project relates specifically to Indigenous Register4 Members. 

28. To acknowledge the contribution of Register4 in any presentation, report and / or published work that results from using the resource, using the standard acknowledgement clause:

    "This research was supported by Register4 through its members' participation in research and/or provision of samples and information.”
    
    

29. To provide UoM in its capacity as the operator of Register4 with copies of all publications created using Register4 information within a reasonable time after publication.

30. To promptly contact Register4 Members who do not satisfy all criteria for inclusion in the Project, to inform them that their participation is not required.  Register4 will supply suggested wording for such contact to ensure Register4 Members’ contributions are appropriately recognised.

31. To provide UoM information that is true and correct and notify UoM as soon as possible if any information provided to Register4 changes (including but not limited to if the Project no longer has ethical approval, is delayed or if funding for the Project is revoked or changed in any way).

32. That they have read, and agree to abide by, the Register4 Access Policy.

33. In this Agreement Privacy Laws means the Privacy Act 1988 (Cth), the Privacy and Data Protection Act 2014 (Vic), the Health Records Act 2001 (Vic) and any approved privacy code or any other privacy laws that apply to either of the parties.

Thank you for contributing to health and medical research that aims to save lives by accelerating our understanding towards the prevention and cure of cancer.