Conditions of Use

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

Recitals

  1. Register4 makes every attempt to maintain up-to-date baseline information and contact details for members willing to participate in research.
  2. The Applicant has successfully submitted a Register4 Application Form and has received Ethics Approval for The Project.
  3. NBCF has agreed to make the Identifying Information available to the Applicant for The project.
  4. The Identifying Information will be made available on the terms and conditions set out in this Conditions of Use Agreement.

The applicant agrees to:

  1. Provide Register4 with the total number of Register4 members who completed the study
  2. Respect the rights and confidentiality of Register4 Members.  
  3. Contact every Register4 member who expressed interest in potentially participating in your project within 2 weeks from the date you receive their contact details from Register4, or in another timeframe as agreed by Register4.
  4. NBCF publishing approved information about your research project on the Register4 website and in communications with Members.
  5. NBCF and Members contacting you about your research project as specified in your Application for Access to Members' form.
  6. Retain and use Register4 members’ contact and/or epidemiological details only during the length of the approved research project, as specified by you in the Register4 Application for Access to Members form. Any changes to this timeframe must be agreed in writing with Register4. 
  7. Only use the information provided by NBCF solely for the purposes of the above research project. Register4 Members’ contact details are not to be kept after the completion of the Research Project and they are not to be approached directly to participate in other research projects that have not been approved by Register4. After completion of the above Research Project, any further contact with the Members must come through the NBCF.
  8. That, in the case of other Research Registers, acceptance of a project by Register4 is granted only for the project that formed the basis of the application, and not for recruitment into the other Register or Registry. A separate application must be submitted for all future projects.
  9. Only publish de-identified data in your Research Project Report.
  10. Not disclose any personal information of Members to anyone outside the research team without Register4 and the Member's prior written consent.
  11. Only use the Member's information in accordance with this Agreement and our Privacy Policy.
  12. Collect, hold and disclose Member's information in accordance with the Privacy Act 1988 (Cth) and relevant Australia State and Territory laws, including the National Privacy Principles.
  13. Submit the following reports in lay language (suitable for display on the website) for Register4's approval :
    1. an annual progress report; and
    2. a final report on completion of the above research project,
    3. an additional final report within 18 months of completion of the project which includes an updated list of publications and presentations.
  14. You may choose to exit your involvement in Register4 and terminate this Agreement at any time by contacting Register4, who will supply you with the necessary documentation.
  15. To the fact that while every attempt will be made to resolve any conflict that may arise, however NBCF may, in our absolute discretion, terminate this Agreement or change Register4 at any time and remove your research project from Register4 .
  16. Not transfer the Member's identified information or information collected during the above research project, overseas without the prior written consent of the NBCF and the relevant Members.
  17. Destroy or return the identifying data collected utilising Register4 members after a minimum of 5 years from the date of publication and in accordance with the Australian Code for the Responsible Conduct of Research
  18. Pay cost recovery charges to NBCF upon invoice as per the Register4 Costs Agreement. 
  19. Acknowledge that, while every attempt is made to maintain accurate and complete data, NBCF makes no representations (including as to the accuracy or completeness) in relation to the information or Register 4 and you use that information, Register4 and our services at your own risk.
  20. To indemnify the NBCF and its directors, officers, employees and agents for all liability, claims and loss which those indemnified suffer arising from any one or more of the following:
    1. A breach by you of this Agreement;
    2. A breach by you of any relevant law;
    3. Your use of the information;  and
    4. Any negligent act or omission by you, your employees, agents or subcontractors in relation to this Agreement and your use of the information.
  21. To the fact that the above indemnity excludes any liability, claim or loss arising from the default or negligence of the NBCF, its directors, officers, employees or agents (to the extent of the contribution).
  22. To the fact that the indemnities in this Agreement shall survive the termination of this Agreement.
  23. That this Agreement is governed by and must be construed in accordance with the laws of the State of New South Wales. The parties submit to the non-exclusive jurisdiction of the courts of that State and the Commonwealth of Australia in respect of all matters or things arising out of this Agreement.
  24. NBCF, as part of NBCF quality control, contacting members who have participated in your projects to obtain feedback on the research process and their experience in the project.
  25. Undertake to share that data within an acceptable timeframe for their project length and publication timeframes, when information is generated as a consequence of use of Register4.
  26. Not describe specific detail of Indigenous status in any research results, unless the project described in this Agreement relates specifically to Indigenous members. 
  27. Acknowledge the contribution of Register4 in any presentation, report and / or published work that results from using the resource, using the standard acknowledgement clause supplied by Register4: "This research was supported by Register4 through its members' participation in research and/or provision of samples and information.” Should your research be through a collaborative project with NBCF, the appropriate acknowledgement is:"This research was supported by funding from the National Breast Cancer Foundation and through Register4 members' participation in research and/or provision of samples and information.” 
  28. Copies of all publications must be forwarded to Register4 within a reasonable time after publication.
  29. Promptly contact Register4 members who do not satisfy all criteria for inclusion in the research project described in this Agreement, to inform them that their participation is not required.  Register4 will supply suggested wording for such contact to ensure members’ contributions are appropriately recognised.
  30. Provide NBCF information that is true and correct and you will notify us as soon as possible if this information changes (including but not limited to if your research project no longer has ethical approval or if your funding is revoked or changed in any way);
  31. Have read, and agree to abide by, the Register4 Access Policy.

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