Admin Core

University Of Colorado Denver, Aurora CO

Investigators

Abstract

ADMINISTRATIVE CORE ABSTRACT The NASCARR Administrative Core (AC) will coordinate and oversee administrative and support activities of the consortium with an overall goal of integrating 25 sites and engaging advocacy group partners to advance clinical trial readiness for sex chromosome aneuploidy (SCA). A leadership team with a wide variety of training, SCA research expertise, and community representation has united with aims to provide integrated management of 3 cores and 3 research projects, while also providing clinical research supports to all NASCARR investigators. The AC leadership structure includes the principal investigator (N. Tartaglia, MD, MS), a national coordinator, and 4 co-investigators including the leadership of The Association for X&Y Chromosome Variations (AXYS). Administrative, regulatory, and finance coordinators and a biostatistical/bioinformatic expert are additionally part of the NASCARR Research Support Team. The Executive Council is the primary core leadership group, and the larger Stakeholder Council brings together all sites, projects, trainees, committees, advocacy groups and advisory councils to share NASCARR projects and activities, and to foster collaboration and improvement. The AC will collaborate with the DMCC to implement best practices for data collection and data sharing and support compliance with all regulatory requirements. AC committees will collaborate with the DMCC and NIH to promote NASCARR and disseminate research findings, through traditional scholarly mechanisms, social media, and a development of a website to inform patients, families, clinicians, and researchers about ongoing research and accomplishments. Committees will also seek to engage community partners including youth/young adults, implement practices to increase participation in research, and engage with outside stakeholders. The NASCARR Research Support Team (NRST) of the AC will provide centralized services to support projects and investigators including bioinformatics, biostatistics, methodological consultation with expertise in rare disease research, recruitment support, regulatory support, best practices for data collection and data sharing, and biorepository management. An annual All-NASCARR meeting will bring together all sites and stakeholders to encourage collaboration, showcase research and progress, and award successes. Progress toward goals for each core and project, and overall program evaluation will occur so that improvements can be implemented. Overall, the AC will work with the NIH, RDCRN, DMCC, and other cores/projects to engage, support, and inspire the NASCARR team to advance to clinical trial readiness.