EGRP News Flash - March 14, 2008

Funding Opportunity Announcement: Rare Diseases Clinical Research Consortia (RDCRC) for the Rare Diseases Clinical Research Network

On behalf of the NIH Office of Rare Diseases (ORD), NCI's Epidemiology and Genetics Research Program (EGRP) announces a Request for Applications (RFA) for new and renewal cooperative agreement applications (U54) for Rare Diseases Clinical Research Consortia (RDCRC). Proposals are sought for RDCRCs that individually focus on a subset of related rare diseases.

Each RDCRC will consist of a consortium of clinical investigators, institutions, and relevant organizations, including patient support organizations, focused on a subgroup of rare diseases. Support is provided for 1) collaborative clinical research in rare diseases, including longitudinal studies of individuals with rare diseases, clinical studies and/or phase I, II, and II/III trials; 2) training of clinical investigators in rare diseases research; 3) pilot and demonstration projects 4) a test bed for distributed clinical data management that incorporates novel approaches and technologies for data management, data mining, and data sharing across rare diseases, data types, and platforms; and 5) access to information related to rare diseases for basic and clinical researchers, academic and practicing physicians, patients, and the lay public.

Required components of a RDCRC application include:

  • A minimum of two clinical research projects (at least one of them must be a longitudinal study);
  • A training (career development) component;
  • At least one pilot/demonstration project;
  • A website for educational and research resources in rare diseases;
  • Collaboration with patient support organization(s); and
  • An administrative unit

The NIH ORD and participating NIH Institutes and Centers intend to commit approximately $8.75 million in Fiscal Year 2009 to fund up to seven new and/or renewal grant applications for RDCRCs. If additional funds become available, approximately ten consortia may be funded. An applicant must request a project period for five years. In general, budget requests should be limited to $1.25 million in total cost.

Letters of Intent are due July 20, and applications are due by August 20, 2008.

Contact: Elizabeth Read-Connole, Ph.D., NCI Representative to the Office of Rare Diseases Committee; email

Access the NIH Guide for Grants and Contracts for details: RFA-OD-08-001External Web Site Policy.

Return to Top