The National Center for Advancing Translational Sciences (NCATS) at the NIH has issued a Notice of Intent to publish a Funding Opportunity Announcement (FOA) for establishing a Data Management and Coordinating Center (DMCC) within the Rare Diseases Clinical Research Network (RDCRN). The purpose of this FOA is to improve the diagnosis, management, and treatment of rare diseases by fostering collaborative, multi-site, patient-centered research across multiple Rare Diseases Clinical Research Consortia (RDCRC). These consortia focus on translational and clinical research for rare diseases, while the DMCC will serve to coordinate research activities, manage data, and engage a broad network of stakeholders.
The DMCC will operate across several cores, each with specific responsibilities to support the network’s objectives. The Administrative Core will oversee support services to individual RDCRCs and the network as a whole. The Data Management Core will focus on data management and facilitate data sharing to allow broader access to research data within the rare disease community. The Clinical Research Core will provide consulting support in areas such as protocol development, study design, biostatistics, and regulatory compliance. The Engagement and Administrative Core will work closely with the RDCRCs and the Coalition of Patient Advocacy Groups (CPAG) to implement an outreach strategy targeted to researchers, healthcare providers, patients, and the public. This core will also manage an internet-based portal to centralize access to information generated by the RDCRCs.
The network structure of the RDCRN, with the support of the DMCC, is intended to enhance both the effectiveness and the impact of rare disease research. By addressing administrative and technical challenges across the consortia, the network aims to streamline clinical study design, promote best practices in data management, and strengthen patient and community engagement.
Funding is expected to reach approximately $1 million in direct costs per year, with a grant period of up to five years. The specific award ceiling and total funding will be provided in the formal FOA, which is expected to be published on June 24, 2024. Applications are anticipated to be due by December 3, 2024, with awards projected by June 17, 2025, and projects starting as early as July 22, 2025.
Eligibility for this opportunity is extensive and includes public and private institutions of higher education, nonprofits with 501(c)(3) status, small businesses, state and tribal governments, and eligible federal agencies.
