BDCRC - Administrative Core

ADMINISTRATIVE CORE – PROJECT SUMMARY/ABSTRACT The Batten Disease Clinical Research Consortium (BDCRC) Administrative Core will serve as the organizational center of the BDCRC, providing leadership, support, and coordination of the Cores and Research Projects. It will serve as the primary liaison between patient advocacy groups, industry, the general public, and all activities of the BDCRC. The Administrative Core will also be the liaison between the BDCRC, Data Management and Coordinating Center (DMCC), and Rare Diseases Clinical Research Network (RDCRN) Consortia. The Administrative Core will support efficient, high quality, and integrated consortium activities, and will ensure optimal operational functioning of the Cores and Projects and contributions to the RDCRN. The Administrative Core aims are to: 1) provide overarching operational support oversight of Cores and Projects, 2) manage institutional and financial agreements and support research compliance, 3) integrate biostatistics and bioinformatics expertise into Cores and Projects, 4) establish a national NCL biorepository, 5) coordinate effective and timely communication among BDCRC sites, advocacy partners, affected families, the RDCRN, and other Batten disease stakeholders to promote collaboration and dissemination of information. Successful execution of the BDCRC Administrative Core aims will facilitate achievement of BDCRC Core and Research Project aims. In turn, this will promote advancements in clinical trial readiness and future pre-clinical discovery into novel therapies for individuals affected by the NCLs. The BDCRC Administrative Core aims will also promote the broader mission of the RDCRN through active collaboration with RDCRN sub-groups and other Consortia.