We have learned from conducting the collaborative studies that comprise PEDIGREE the crucial importance of an appropriate and independent governance structure. PEDIGREE is not a group of researchers seeking support for their own and their collaborators' research projects and career development. Members of the PEDIGREE management team will continue to conduct research related to the individual PEDIGREE platforms but will seek funding for this work through the normal competitive processes and their research.

We are experienced in this, having instigated similar processes for the Australian Twin Registry and the Health 2020 Cohort Study, both supported by the previous NHMRC Enabling Grant Scheme, and for the Breast and Colon Cancer Family Registries supported by NIH.

Our management team curates the PEDIGREE resources on a routine basis. Access to PEDIGREE is governed by an independent Advisory Board with national representation that includes a subcommittee devoted to the detailed assessment of proposals for access, ensuring fair, equitable and transparent rights to use the resource.  We are also committed to consumer participation, community engagement and advocacy. To this end, we have Australian community representatives on the steering committees of the Breast and Colon Cancer Family Registries and of our local studies. We have similar representatives on the PEDIGREE management committee.

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