Governance
How the ADVANCE study is managed, reviewed, kept accountable.
The ADVANCE study is overseen by an independent scientific advisory group (ISAG), the ADVANCE Study charity, the Project Board, and a Participants Panel.
The ISAG is a group of advisors who agree to provide scientific and strategic guidance to – and support for – the ADVANCE Study. This encompasses providing advice on ADVANCE’s scientific objectives and evaluating ADVANCE’s scientific outputs in terms of quality, quantity, impact, and profile alongside advising on ADVANCE’s strategic plans, sustainability, fundraising, and enrichment of the Study. As well as this the ISAG provide a referral function for the ADVANCE Project Board to review complex, controversial or disputed proposals for access to data and samples, or for disputed strategic decisions. More on the ISAG can be found here.
The ADVANCE charity was set up in late 2018. The Charity helps raise funds for the ADVANCE Study and also advises the ADVANCE Study Project Board on the direction of the Study. The charity registration number of the Charity is 1190361. The Charity meets quarterly and produces an annual report. You can read more about the ADVANCE charity here.
The ADVANCE Project Board (found here) is made up of a team of leading academics headed up by the study’s Chief Investigator. The Project Board meet monthly to discuss all aspects of the study, from monitoring the Study’s progress against its scope, quality, and deliverables milestones, to ensuring procedures are in place to protect the participants’ interests and rights. The Project Board also review all applications and requests for data access.
The ADVANCE Participant Panel is a participant engagement group made up of approximately 20 ADVANCE Study participants who provide feedback, advice and critique on whatever aspect of the study is presented to them. The overall aim of the Panel is to prevent attrition from the study cohort over time and to promote the needs of ADVANCE Study participants.
The Five Safes Framework is a set of established principles which enable studies such as the ADVANCE study to provide safe research access to study participant’s data and biomedical samples. Find out more here: Five Safes Framework.