ARDVARC-Advancing Rare Disorders: Vascular mAlformation Research Network with CaNVAS: Admin Core

ARDVARC Administrative Core: Project Summary/Abstract The Administrative Core (AC) of Advancing Rare Disorders – Vascular mAlformation Research network with CaNVAS is responsible for the overall administration and operation of this RDCRC, including coordination and management of policy and procedure development, contracting, funds allocation, communication, collaboration with other RDCRCs, the DMCC, and the overarching RDCRN. The AC will develop metrics to assess the success of ARDVARC. ARDVARC’s AC will build upon the existing CaNVAS consortium infrastructure to manage its Rare Disease Clinical Research Center’s (RDCRC’s) executive functions. Administrative support for ARDVARC (CaNVAS) will be headquartered at the Children’s Hospital of Philadelphia (CHOP) where Dr. Denise Adams, is the Chair of CaNVAS. Dr. Adams will serve as the PD of ARDVARC and the Administrative Core PI because of her experience in the management of rare disease and multisite research programs in hematology, oncology, and vascular anomalies. Michael Jeng, PD of ARDVARC will serve as Co-I. They will be joined by two patient advocates from groups that work with CaNVAS: Mellenee Finger, Director of the Klippel- Trenaunay (K-T) Support Group and Elizabeth Bovee, a member of the Lymphangiomatosis and Gorham’s Disease Alliance (LGDA). The administrative core will also include a Research Program Manager, Melissa Casey, who has comprehensive experience in collaborating with industry, contracting, budget and clinical trial administration as well as an Administrative and Research Coordinator, Joelle Pitkoff. As a member of the Cancer Center at CHOP, Dr. Adams receives support from the Clinical Research Center who will then provide regulatory guidance, grant submission assistance, and biostatistics/bioinformatics support. The experience that already exists amongst this team will strengthen the outcomes for ARDVARC. The AC core will ensure a robust scientific approach which includes seasoned and early career practitioners, scientists, patient advocates, an external advisory committee and administrative staff with the skills and experience in the management of multisite clinical research programs and rare disease research. The AC will provide administrative support for ARDVARC, establish an infrastructure for clinical trial participation and facilitate collaboration and coordination of the patient advocacy participation. ARDVARC will work with the RDCRN, the DMCC and other RDCRCs to promote collaboration and discovery.