[NWAHS – Form 1] /
Request No:
This agreement must be completed and signed by all relevant parties before any data/information/analysis can be released. Any subsequent updates must be approved by the Chief Investigators/Study Management of the North West Adelaide Health Study (NWAHS) .
PLEASE NOTE: The data we collect relies on the cooperation of the NWAHS participants. People participating in our studies trust the study team to protect their identity and the information they provide. To protect their confidentiality, recipients who have been granted access to these data must adhere to the requirements of this data agreement. Violation of this agreement may result in legal action by study participants, their families or the NWAHS.
For the purposes of this agreement, data refers to information collected either from self-reported survey questionnaires, biomedically measured examinations or bio-samples (including blood and urine) during periodic or followup assessments. A summary of the study and data collection items is available either from the NWAHS webpage on the PROS website at The University of Adelaide - [http://health.adelaide.edu.au/pros/data/nwahs/], or via email . Prior to making an application, people may wish to confer with a member of the study team to discuss the rationale, feasibility and appropriateness of the proposal.
AGREED TERMS & CONDITIONS
It is mutually agreed that:
1. Research Project - the data/ information/ analysis will be used by the recipient solely in connection with the research project specifically described in their Study Proposal, and will not be used in any research that is not disclosed and approved as part of the Research Project. The Study Proposal will include aims, hypotheses to be tested, significance, background, research plan with details of methods to be used and references (where relevant). Where relevant, it should include a list of the data variables (and format) required and also should include the rationale for the data requested, including considerations of statistical analysis and power. Proof of ethics approval will be required before the dataset and accompanying documents are released. The recipient of the data/information/analysis will need to submit a completed Data/Information/ Analysis Agreement for each research project for which data is requested.
2. Non-transferability – this Data/Information/Analysis Agreement is not transferable. The recipient agrees that either substantive changes made to the designated research project or the appointment of another researcher to complete the research project using the data, will require a new Data/ Information/Analysis Agreement with the amendments.
3. No distribution – the recipient agrees to retain control over the data and further agrees not to transfer the data, with or without charge, to any other entity or individual.
4. Publication – A manuscript proposal [NWAHS Form 2] must be submitted for each planned publication. Co-authors will include at least one member of the NWAHS CI Management Group.
5. Acknowledgement – the NWAHS Chief and Associate Investigators continue to make a substantial long-term contribution to develop and maintain the study database. Therefore, their contribution, together with that of the study participants and research, clinic and recruiting staff, needs to be appropriately acknowledged in any and all oral and written presentations, disclosures and publications resulting from any or all analyses of the data, using the paragraph below:
This manuscript has been reviewed for scientific content and consistency of data interpretation by Chief Investigators of the North West Adelaide Health (NWAH) Study. The NWAH Study team are most grateful for the generosity of the cohort participants in the giving of their time and effort to the study. Then NWAH study team also is appreciative of the work of the clinic, recruiting and research support staff for their substantial contribution to the success of the study.
6. Non-identification – the recipient agrees that the Data/Information/Analysis Agreement will not be used, either alone or with other information, in any effort whatsoever to establish the individual identities of any of the participants from whom the data/ information/ analysis were obtained.
7. Payment – the NWAH Study charges for requests for data/ information/ analysis. This will need to be negotiated on an individual basis including cost for any data analysis.
8. Weighting – all NWAH Study data are weighted and the appropriate weighting should be used in all prevalence related analyses. Please discuss with Study management member(s) and provide justification if weighted data are not to be used.
9. Security – data must be kept secure; not to be accessible by those who do not have authorised access.
10. Refusal to release data – the NWAH Study has the right to refuse to release data if they feel that it will be used inappropriately, on a ‘fishing’ exercise, or if the user has conflicting agenda with the study that would jeopardise its position and programs.
11. Termination of agreement – the study may terminate this Data/Information/Analysis Agreement if the recipient is in default of any condition of this agreement and such default has not been remedied within thirty (30) days after the date of written notice of such default by the NWAHS.
Details of Recipient:
Name:Organisation:
Telephone:
E-mail:
Brief description of project or Title of project (detailed Scientific Proposal must be attached):
Purpose for use of data: Publication / Presentation / Thesis / Dissertation / Other:
Source of funds:
Name of Project Supervisor/Manager:
Name of NWAHS chief investigator supervisor/co-author:
Data format (if relevant): / £ MS Excel / £ MS Access / £ SPSS
£ Other (please specify):
Date:
Signature:
Approval by (name of Chief Investigator):
CI Signature:
Date:
Data/Information/Analysis Agreement and Scientific Proposal should be lodged with the NWAH Study either electronically (by email) to or or via mail to the Population Research & Outcome Studies, Discipline of Medicine, GPO Box 498 Adelaide SA 5001.Version June 2011 2 of 2