Rare Disease Collaboration: NIH Funds Research Consortia For Studying > 200
The National Institutes of Health (NIH) announces October 8th the awarding of $29 million to expand NCATS’ (National Center for Advancing Translational Sciences) collaborative Rare Diseases Clinical Research Network (RDCRN).
NCATS, established in 2011, is the newest of the 27 Institutes and Centers (ICs) at NIH. NCATS’ purpose is to “transform the translational science process so that new treatments and cures for disease can be delivered to patients faster.”
RDCRN is established in 2003 by NIH’s Office of Rare Diseases; NCATS now oversees the program. The purpose of RDCRN is that by collaborating with different stakeholders, with study enrollment, and with data sharing, medical research on rare diseases can progress and new treatments can be developed.
Some of the RDCRN numbers are as follows:
• Approximately 29,000 participants have enrolled in network clinical studies since 2003
• 2,600 researchers
• 98 patient advocacy groups
• 91 studies in process.
RDCRN is made up of unique consortia and a Data Management and Coordinating Center (DMCC) that work together to “improve availability of rare disease information, treatment, clinical studies, and general awareness for both patients and the medical community.” RDCRN also helps patients with the latest information and connects them with advocacy groups, clinical research, and expert doctors. RDCRN helps to maintain the relationship between patients and researchers.
There are currently 16 consortia with the new addition of the following 6 new consortia as a result of the new reward:
• Brittle Bone Disorders (BBD) Consortium – Baylor College of Medicine, Houston
• Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium – University of Miami Miller School of Medicine
• Consortium of Eosinophilia Gastrointestinal Disease Researchers (CEGIR) – Children’s Hospital Medical Center, Cincinnati
• Developmental Synaptopathies Consortium (DSC) Associated with TSC, PTEN, and SHANK3 Mutations – Children’s Hospital Corporation, Boston
• Frontotemporal Lobar Degeneration Clinical Research Consortium (FTLD CRC) – University of California, San Francisco
• Rare Lung Diseases Consortium (RLDC) – Cincinnati Children’s Hospital Medical Center.
For the entire list of the now 22 Research Consortiums, please reference the website.
Physician scientists at the 22 Research Consortiums will collaborate with representatives of 98 patient advocacy groups with the mission to “advance clinical research and investigate new treatments for patients with rare diseases.”
According to Pamela M. McInnes, D.D.S., acting director of the NCATS Office of Rare Diseases Research and NCATS deputy director:
“The real strength of the collaboration among RDCRN consortia is the power to obtain high-quality data. These data form an important base to better define patient populations, attract industry partners, share information on best practices and advance treatment options for the rare disease patient community.”
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