Medical Genome Reference Bank – Data Access

There are three documents that govern the Medical Genome Reference Bank data access:

• The Data Access Policy (DAP) summarises the governance policy applied to individual and institutional access to the Medical Genome Reference Bank (MGRB).
  Download Data Access Policy v1.03 PDFfile_download
• The Data Access Application (DAA) is an application to gain access to comprehensive genotypic and clinical information from MGRB participants. This application is based on the exacting standards of the European Genome-phenome Archive.
  Download Data Access Application v1.5 PDFfile_download
• The Information Handling Statement (IHS) describes how private information is handled in the MGRB project.
  Download Information Handling Statement v1.00 PDFfile_download

The application form must be submitted through the Garvan REMS system. A step-by-step guide is here.

Curated data will be openly accessible to the international research community through the SGC website. Preliminary features will include a Beacon, as defined by the Global Alliance for Genomics and Health, extensive variant annotation, complex queries (including genetic annotations, and genomic regions), visualisation of variant data (e.g. genome viewer/gene networks) and ultimately, analysis tools for assessing the genetic burden of individual variants and variant subsets. While basic demographic and phenotypic information will be incorporated into the SGC data portal, researchers are invited to apply for access to comprehensive genotypic and clinical information to support high-level integrative analysis.

To maintain participant privacy and confidentiality, whilst maximising MGRB utility, we have deployed a tiered data management system that determines the richness of data that is made available to researchers (as summarised in the schematic below). This consists of 3 access tiers; Open access, Controlled access and Restricted access.