Limited Competition for the Continuation of Rare Diseases Clinical Research Consortia in the Rare Diseases Clinical Research Network (U54) | Apply Online

Opportunity Summary:

This grant opportunity (PAR 11-187) is a National Institutes of Health (NIH) funding announcement for a limited competition cooperative agreement (U54) focused on continuing certain existing rare diseases research efforts within the Rare Diseases Clinical Research Network (RDCRN). The main goal is to allow the National Institute of Neurological Disorders and Stroke (NINDS) consortia that were previously funded under the American Recovery and Reinvestment Act (ARRA) to compete for an additional three years of participation in the RDCRN. In other words, this is not an open call for brand-new groups to form; it is a continuation opportunity specifically designed for a defined set of already-active NINDS rare diseases consortia.

The RDCRN itself is described as a coordinated, collaborative network built around Clinical Research Consortia. These consortia bring together clinical investigators and patient support or advocacy groups, and they work in partnership with a Data Management Coordinating Center. The structure is meant to make rare disease research more efficient and more connected than it would be if each disease group worked in isolation. A major emphasis is placed on communication across sites, sharing tools and resources, and using multidisciplinary teams so that clinical, laboratory, data, and patient-community perspectives are integrated into the research program.

The scientific and programmatic focus of the RDCRN, as highlighted in the announcement, centers on two core aims. First, the network prioritizes collecting high-quality clinical information that can clarify the natural history of rare diseases, meaning how these conditions progress over time in real patients. This includes building the evidence base needed to identify and validate biomarkers and to advance improved methods for diagnosis, prevention, and treatment. Because many rare diseases lack large patient populations, standardized datasets, and long-term follow-up, the RDCRN model is intended to overcome those barriers by coordinating multiple clinical sites and aligning data collection practices. Second, the network explicitly supports training and development of new clinical investigators who will specialize in rare diseases research, helping ensure a pipeline of researchers capable of sustaining and expanding this field over time.

From an administrative standpoint, the award mechanism is a cooperative agreement, which generally indicates substantial involvement by NIH program staff compared with a typical research grant. The funding opportunity is categorized as discretionary and falls under the health activity area, with CFDA number 93.853 (Extramural Research Programs in the Neurosciences and Neurological Disorders). There is no cost sharing or matching requirement stated for applicants, which means applicants are not required to contribute a set percentage of non-federal funds as a condition of receiving the award.

Eligibility is narrowly restricted. The announcement specifies that only currently active NINDS Rare Diseases Consortia are eligible to apply, reflecting the limited competition nature of the FOA and its intent to extend participation for existing ARRA-funded groups rather than recruit new entrants. The posting and creation date listed is March 31, 2011, with an original and current closing date of June 15, 2011, and an archive date of July 16, 2011, indicating the opportunity was time-limited and has since been archived.

For applicants or readers seeking the full details, the announcement provides a link to the NIH Grants Guide page hosting the FOA text. It also includes contact information for technical issues accessing or linking to the announcement, directing inquiries to the NIH Office of Extramural Research (OER) webmaster email.

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