LifeCourse Data Framework
The aim of the LifeCourse initiative is to enable researchers to capitalise on the availability of extensive cohort data to advance understanding of health issues emerging over the life span. To this end, LifeCourse brings together information regarding over 30 cohorts into a common platform. Each cohort is independently managed by the relevant academic or research organisation leading that study, with their own ethics and governance protocols in place. Murdoch Children’s Research Institute (MCRI) operates LifeCourse and collaborates with these academic and research organisations and their respective cohort teams to promote reuse of these valuable data, including by:
- presenting cohort metadata in a standardised format on a publicly accessible website, and
- providing a central gateway for data access requests, which are evaluated and actioned by each relevant cohort data custodian.
The purpose of this document is to provide a framework for considering current data governance arrangements at the intersection between cohorts and LifeCourse, particularly regarding study metadata and data access. The primary audience are cohort data custodians and teams who undertake the day-to-day operations of their study. Articulating this framework is timely in the context of efforts across MCRI to support best practice approaches to data custodianship. We anticipate this framework will continue to evolve over time in response to changing cohort needs, Institute conventions, available technology, and best practice standards.