Information for researchers
Principles for using the 45 and Up Study resource
Applications to use the 45 and Up Study resource are reviewed by the Study team and/or the 45 and Up Study Scientific Advisory Committee. Principles have been established that direct the process and procedures for using the Study resource. The aim of these principles is to encourage use of data from the 45 and Up Study to conduct high quality research.
The principles guiding the use of the 45 and Up Study resource are:
Protecting participants
- Applications to use the Study resource will only be approved if they have appropriate ethical approval
- Projects will not be approved if there are concerns that particular groups or individuals within the cohort are being over-surveyed
- Projects will only be approved where the researcher agree to sing a confidentiality and data use agreement
- Materials that will be used to collect additional data from participants must be approved by the 45 and Up Study Coordinating team before use
Ensuring equity of access
- The policies and procedures for the 45 and Up Study are equitable, transparent and committed to facilitating high quality research
- Any individual or group from NSW can apply to use the 45 and Up Study resource
- Groups from outside NSW are also encouraged to apply to use the Study resource however the project team must also include at least on researcher from NSW
- Access to the resource is non-exclusive. Researchers can not reserve parts of the data for their own use
- Individuals within the Study team are not automatically involved ex officio in all projects. These individuals have the opportunity to undertake their own research using the cohort withing the same rules as other researchers. Similarly they may accept or refuse invitations to collaborate on other research
- There will be no attempt to pick winners or identify priority areas for research. Provided that the proposal is peer reviewed as appropriate, has approval from relevant ethics committees and does not result in over-surveying of particular groups, access will be agreed.
Maintaining scientific integrity
- Applications to use the Study resource will be reviewed by the 45 and Up Study Scientfic Advisory Commitee and projects will only be approved if they are: 1) Judged to be of an appropriate scientific standard; 2) can be addressed satisfactorily using data from the Study; and 3) are in the public interest
- Following approval by the 45 and Up Study Scientific Advisory Committee, data will only be released with appropriate ethical approval
- All publications, communications and presentations arising from use of the Study resource must include standard details about the cohort and its methodology; and be provided to the Study team for technical review before they are submitted
Ensuring good management of research data and materials
- Projects will only be approved where the researchers agree to 1) sign a confidentiality and data use agreement, including a committment to keep all data secure and confidential; 2) provide annual reports on the progress of the approved project; and 3) seek approval for an extension to the project if it is not completed within 6 months of the original approved timeframe
Ensuring public benefit
- Where there are questions regarding the benefit of the project to the public, projects will be referred to the 45 and Up Study Community and Ethical Oversight Committee for review
- Projects will not be approved where there is opportunity for commercial gain or profit without the project being in the public interest
- Researchers must agree to meet proposed timeframes and disseminate information on findings appropriately
- Additional data that have been gathered by approved researchers must be made available for access by other researchers, with appropriate supporting documentation, after an agreed period of exclusive use
Encouraging collaboration
- Collaborative research projects will be encouraged to avoid duplication of research efforts or competition for the same funding sources. The Study team will look for and encourage opportunities for collaboration where appropriate
- Students wishing to use the Study resource will be advised that their access to specific data from the cohort is non-exclusive;
- All researchers, including students, are encouraged to keep up to date with research being undertaken using data from the 45 and Up Study. A list of approved projects is maintained here.
Sustaining the Study resource
- Charges appy for the use of the Study resource according to the Study charging policy. These charges must be paid before access to Study data is granted
- Administrative and data management resources will be provided by the Study team to researchers on a first come, first served basis
Ensuring appropriate intellectual property ownership
- All intellectual property rights in the Study resource are vested and remain vested in the Sax Institute. Where the researcher conducts a sub-study by reference to the Study resource, whatever data and material is generated by the sub-study must be made available for use by the Sax Institute and its licensees. The intellectual property rights in the data, materials and inventions resulting from the authorised use of the Study resource by the researcher is vested in the researcher
Ensuring appropriate publication and dissemination of research findings
- The Sax Institute is entitled to an annual written report on the use of the Study resource as well as a report on completion of the use of the Study resource as well as a report on completion of the use of the Study resource. The Sax Institute also has a right of prior review of any publication/presentation proposed to be made by the Study resource user, and the right to disseminate such publication/presentation material to third parties
- All publications, communications and presentations arising from use of the Study resource must: 1) acknowledge the Sax Institute and Study funding partners and supporters in a format defined by the Sax Institute; and 2) include standard details about the cohort and its methodology