June 01, 2017

NIH has announced a mandate requiring use of a single Institutional Review Board (sIRB) review for multi-site federally-funded studies. The intent of the mandate is to increase efficiency, uniformity, and reduce the time to obtain IRB approval for multiple sites on the premise that individual sites submitting research to their local IRBs is costly, results in duplication of effort, results in inconsistencies among sites, and delays implementation of research.

June 06, 2016

The Porphyrias Consortium (PC) seeks to continually improve the diagnosis and treatment of the eight major porphyrias.

June 05, 2016

Investigators from the 'MILES' (Multicenter International LAM Efficacy of Sirolimus) trial recount the unique path it took seeking FDA review of their drug.

June 04, 2016

The American Partnership for Eosinophilic Disorders (APFED) is one of several Patient Advocacy Groups collaborating with the Consortium of Eosinophilic Gastrointestinal Disease Researchers to conduct research. APFED provides support in many ways, such as engaging the patient community, participating in committee work, and even pledging supplement funding to support future research.

June 03, 2016

An article published in Orphanet Journal of Rare Diseases shows the integral partnership between RDCRN investigators and the associated patient advocacy group members, as well as how this partnership has enhanced recruitment for protocols, study design, and consortium training programs.

June 02, 2016

The Rare Diseases Clinical Research Network (RDCRN) sponsored the 4th Conference on Clinical Research for Rare Diseases (CCRRD) on Thursday, November 3, 2016 in Washington, D.C.

June 01, 2016

The RDCRN social media presence aims to increase awareness of rare diseases, as well as assist with protocol accrual and registrations for the RDCRN Contact Registry.