Data Management and Coordinating Center (DMCC) for Rare Diseases Clinical Research Network (RDCRN) (U2C Clinical Trial Not Allowed) | RFA TR 18 021

Opportunity Information: Apply for RFA TR 18 021

The National Institutes of Health (NIH) released this funding opportunity to support a single Data Management and Coordinating Center (DMCC) for the Rare Diseases Clinical Research Network (RDCRN) under a U2C cooperative agreement mechanism, with clinical trials not allowed under this particular announcement. The RDCRN is built around multiple Rare Diseases Clinical Research Consortia (RDCRCs), each focused on improving diagnosis, clinical management, and treatment approaches for rare diseases. The DMCC is meant to function as the central operational and technical backbone for the network, providing consistent infrastructure and coordination so that individual consortia can run their studies efficiently while also enabling cross-consortium collaboration and network-wide initiatives.

A core feature of the DMCC is that it supports both consortium-level needs and “trans-network” activities, meaning work that spans across all consortia and helps the RDCRN operate as a unified network rather than a set of isolated projects. The FOA describes four major functional cores that the DMCC is expected to provide. The Administrative Core covers network coordination, governance support, meeting planning, documentation, policy implementation, and overall operational management that keeps the RDCRN aligned on shared procedures and timelines. The Data Management Core focuses on the systems and practices needed to collect, manage, secure, and quality-check research data across the network, supporting consistency in data standards, reliable databases, and coordinated reporting. The Clinical Research Core is aimed at enabling high-quality clinical research operations across consortia, including common approaches to study implementation and network-level support activities that help clinical research run smoothly (even though the award itself is “Clinical Trial Not Allowed,” it still supports clinical research infrastructure and coordination rather than sponsoring a clinical trial within the DMCC award). The Engagement and Dissemination Core addresses how the network connects with participants, patient communities, and other stakeholders, and how results, resources, and updates are shared in ways that improve visibility and impact of rare disease research.

This opportunity was published as RFA-TR-18-021 and categorized as a discretionary funding opportunity using a cooperative agreement funding instrument. Cooperative agreements differ from standard grants in that NIH typically expects substantial involvement in the project, such as active coordination, oversight, and collaboration on key elements of the program’s execution. The activity category is Health, and the associated CFDA numbers listed are 93.350 and 93.853. The source information indicates an award ceiling of $3,500,000. The original closing date was October 9, 2018, and the opportunity was created June 8, 2018.

Eligibility is broad across government, academic, nonprofit, and private-sector organizations. Eligible applicants include state, county, and city or township governments; special district governments; independent school districts; public and state-controlled institutions of higher education; private institutions of higher education; federally recognized Native American tribal governments; other Native American tribal organizations; public housing authorities/Indian housing authorities; nonprofits with and without 501(c)(3) status (excluding institutions of higher education in those nonprofit categories); for-profit organizations other than small businesses; and small businesses. The FOA also explicitly highlights additional eligible applicant types such as Alaska Native and Native Hawaiian Serving Institutions, Asian American Native American Pacific Islander Serving Institutions (AANAPISIs), Hispanic-serving Institutions, Historically Black Colleges and Universities (HBCUs), Tribally Controlled Colleges and Universities (TCCUs), faith-based or community-based organizations, eligible federal agencies, regional organizations, tribal governments that are not federally recognized, and U.S. territories or possessions.

Foreign eligibility is restricted in a specific way. Non-domestic (non-U.S.) entities (foreign organizations and foreign institutions) are not eligible to apply as the applicant organization, and non-domestic components of U.S. organizations are also not eligible to apply. However, “foreign components,” as defined in the NIH Grants Policy Statement, are allowed, meaning a U.S.-based applicant may include certain foreign activities or collaborations if they meet NIH’s definition and requirements for a foreign component, even though a foreign institution cannot serve as the primary applicant.

Overall, the DMCC opportunity is designed to fund the central coordinating entity that makes the RDCRN function effectively at scale: setting up and maintaining shared systems, harmonizing operations across consortia, supporting high-quality and consistent data practices, facilitating network-wide collaboration, and strengthening stakeholder engagement and dissemination so that rare disease research efforts are better organized, more interoperable, and more impactful.

• The National Institutes of Health in the health sector is offering a public funding opportunity titled "Data Management and Coordinating Center (DMCC) for Rare Diseases Clinical Research Network (RDCRN) (U2C Clinical Trial Not Allowed)" and is now available to receive applicants.
• Interested and eligible applicants and submit their applications by referencing the CFDA number(s): 93.350, 93.853.
• This funding opportunity was created on 2018-06-08.
• Applicants must submit their applications by 2018-10-09. (Agency may still review applications by suitable applicants for the remaining/unused allocated funding in 2026.)
• Each selected applicant is eligible to receive up to $3,500,000.00 in funding.
• Eligible applicants include: State governments, County governments, City or township governments, Special district governments, Independent school districts, Public and State controlled institutions of higher education, Native American tribal governments (Federally recognized), Public housing authorities/Indian housing authorities, Native American tribal organizations (other than Federally recognized tribal governments), Nonprofits having a 501 (c) (3) status with the IRS, other than institutions of higher education, Nonprofits that do not have a 501 (c) (3) status with the IRS, other than institutions of higher education, Private institutions of higher education, For-profit organizations other than small businesses, Small businesses, Others.

Apply for RFA TR 18 021

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