Accessing the ORIGINS cohort, database or biological samples involves a process of review and approval.
All requests for access to and/or use of The ORIGINS Project data and biological samples are encouraged from new researchers.
Researchers working at one of the contributing institutions (Joondalup Health Campus or Telethon Kids) or third-party researchers, who are external to Telethon Kids and Joondalup Health Campus, can request access to the data and samples.
All new sub-project applications require a completed Research Proposal to be submitted to The ORIGINS Project Management Group and Scientific Committee for review and approval. This will allow The ORIGINS Project Management Group and Scientific Committee to assess:
The viability and feasibility of the research (e.g., timeframe, available resources, budget)
Any potential overlap with currently approved Sub-projects
Whether the research questions, aims and objectives are consistent with the goals, vision and strategy of The ORIGINS Project
Whether the methods and sample size are appropriate and justified
Whether the number of Participants and/or volumes/biological samples requested are justifiable in terms of participant burden and impact to the finite ORIGINS Biobank
If the research team are suitably qualified and experienced to implement the proposed sub-project
If there is sufficient community and consumer input
A “sub-project” refers to a nested research project or study that is incorporated into and/or connected to The ORIGINS Project via access to and/or use of the ORIGINS cohort or database.
Develop a research proposal and include, where possible, community reference group and participant reference group input.
Present the research proposal to a Research Interest Group meeting. Consider and incorporate any feedback from the Research Interest Group into the proposal.
Submit the research proposal to ORIGINS (firstname.lastname@example.org). An Administration and Access Fee quote may be provided at this point, to include in the budget, noting that this may be subject to change depending on the final approved sub-project. Data/sample requirements may be discussed with relevant ORIGINS team members to confirm availability/feasibility.
Present the research proposal for review by the Scientific Committee and Project Management Group. The Scientific Committee and Project Management Group will require specific information regarding sample size, method and time of recruitment, program content, resourcing, timeframe, specific requests of ORIGINS and detailed background/rationale with references.
Incorporate any feedback from the review and provide responses to feedback (a second round of review may be required depending on the nature of the sub-project).
After final approval of the sub-project by the Scientific Committee and Project Management Group, research ethics approval will need to be sought from Ramsay’s HREC and site governance. Full details can be found here.
All ORIGINS sub-projects are then required to sign a Sub-Collaboration Agreement which clearly states our expectations, obligations and reporting requirements. The Agreement will also include a payment schedule and other requirements, such as a data management plan.
A ‘Welcome to ORIGINS’ meeting is then held to start the project implementation process.