Posted by George Shaw on Feb 6, 2013
On February 1, 2013 NCATS released a Notice of Intent to publish the next Funding Opportunity Announcement to compete the Rare Disease Clinical Research Consortia (RDCRC). This is an ongoing program and these consortia are based on multi-site networks bringing together a wide range of partners (academic, advocacy, government, and sometimes industry) for clinical studies and trials.
RDCRCs are a unique way of addressing key trial readiness issues, such as natural history, biomarkers, and development of endpoint measures and have been incredibly valuable for many disease areas (for examples of successful consortia, see the RDCRC website. Note the language in the Notice that applicants address "a minimum of three rare diseases."
Successful RDCRC applications require careful planning and choices as to what the key needs are for particular diseases and thus what would constitute the most competitive application. Not so much about just what one can do, or simply wants to do, but rather about asking what the key needs are for a field and how that can be best accomplished. Two or more applications from splintered subgroups representing the same diseases are likely to be at a handicap.
Make no mistake, this is a competitive program, as RDCRCs can support activities that may otherwise be difficult for many funders to support and can very much unite clinical research in specific disease areas. With the requirement for multiple partners, it takes time to prepare a competitive application. So, it’s important that applications be both well-planned and inclusive. It’s expected that advocacy groups such as Friends of FSH Research will be participants in RDCRC applications. Such organizations can play key roles in efforts to build partnerships necessary for strong applications.