Rare Diseases Clinical Research Consortia (RDCRC) for Rare Diseases Clinical Research Network (U54) | Apply Online

Opportunity Summary:

The Rare Diseases Clinical Research Consortia (RDCRC) for the Rare Diseases Clinical Research Network (RFA-TR-13-002) is an NIH cooperative agreement (U54) designed to strengthen and coordinate clinical research across multiple rare diseases by funding consortia that can work collaboratively, enroll and follow patients over time, run clinical studies and trials, and generally accelerate evidence generation in areas where patient numbers are small and expertise is scattered. The program is structured around building durable, multi-site teams with the infrastructure to recruit participants, standardize clinical assessments, and generate high-quality data that can meaningfully inform care and future research. Because it is a cooperative agreement, awardees should expect substantial NIH program involvement in oversight, coordination, and network-level expectations rather than a hands-off grant model.

A central requirement is that every RDCRC application must address four core elements. First, the consortium must carry out collaborative clinical research in rare diseases, explicitly including longitudinal studies and allowing for clinical studies and/or clinical trials. This emphasizes sustained patient engagement and standardized follow-up so that investigators can understand natural history, identify clinical endpoints, and evaluate interventions in a rigorous way. Second, the consortium must include a training component aimed at developing clinical investigators in rare diseases research, reflecting the reality that rare disease research depends heavily on cultivating specialized clinical research talent. Third, applicants must support pilot or demonstration projects, described as proof-of-concept clinical research, which are typically smaller, targeted studies intended to test feasibility, refine methods, generate preliminary data, or explore innovative ideas that could later scale into larger trials. Fourth, the consortium must provide access to information related to rare diseases not only for researchers and clinicians, but also for patients and the general public, reinforcing an expectation of outreach, transparency, and practical dissemination of knowledge.

The announcement draws a clear line between what the RDCRC should do and what will be handled elsewhere in the network. While the RDCRC is expected to generate and use clinical data as part of its research program, the dedicated clinical data management and informatics functions for network-wide efficiency, data mining, and cross-disease data sharing are slated for a separate Data Management and Coordinating Center (DMCC) award, to be solicited under another FOA. In other words, this RDCRC funding is for the disease-focused consortia and their research, training, pilot projects, and information access efforts, while the shared network backbone for data coordination is handled through the DMCC mechanism.

From a funding and administrative standpoint, the opportunity was posted in August 2013 with an application deadline of November 7, 2013, and an archive date of December 8, 2013. The estimated total funding amount listed is $17.5 million, with an award ceiling of $1.25 million. There is no cost sharing or matching requirement. The program is cross-cutting and aligns with multiple NIH health research areas, reflected in the multiple CFDA listings spanning oral health, cardiovascular, lung, blood, arthritis and musculoskeletal/skin, diabetes/digestive/kidney, neurosciences, allergy/infectious disease, microbiology/infectious disease, and child health and human development. This breadth signals that the network is intended to support rare diseases across many organ systems rather than being limited to a single institute or specialty.

Eligibility is broad across U.S.-based organizations and governmental entities, including public and private institutions of higher education, nonprofits (including 501(c)(3) and certain non-501(c)(3) organizations), for-profit organizations other than small businesses, small businesses, and a range of government applicants (state, county, city/township, special district), as well as tribal governments and tribal organizations. The opportunity also explicitly includes various institution types such as HBCUs, Hispanic-serving institutions, tribally controlled colleges and universities, Alaska Native and Native Hawaiian serving institutions, and AANAPISI institutions, along with faith-based and community-based organizations and eligible federal agencies. Foreign institutions are not eligible to apply, and non-U.S. components of U.S. organizations are not eligible; however, foreign components as defined in NIH policy are allowed, which typically means certain internationally based elements can be included when justified and compliant with NIH rules.

In practical terms, NIH is using this FOA to build a network of rare disease consortia that can do four things at once: run serious multi-site clinical research (including long-term follow-up), train the next generation of rare disease clinical researchers, seed innovative pilot studies that can mature into larger efforts, and ensure that knowledge and resources about rare diseases are accessible beyond academic circles. The full announcement was hosted on the NIH Grants Guide website under RFA-TR-13-002, and NIH’s Office of Extramural Research provided contact support for technical access and linking issues through the OER webmaster email listed in the notice.

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