Spotlight - Volume 2, Issue 1. Spring 2011
In this issue of Spotlight on Rare Diseases, we begin a series that will introduce the 19 current Rare Disease Clinical Research Consortia. This network, overseen by the Office of Rare Disease Research and the categorical institutes, is the largest such program ever undertaken in the rare disease field. We believe it is valuable for the scientific community and patients and caregivers to be aware of what the Rare Disease Clinical Research Consortium Network is doing.
Five of the 19 consortia received initial funding in 2003 and have been refunded during the current five year period. The remaining 14 were funded in 2008. We will introduce one in each issue, beginning with the five original programs. The first one is the Clinical Investigation of Neurological Channelopathies (CINCH) Consortium directed by Robert C. Griggs, M.D.
Dr. Griggs’ model is an important one for those who wish to develop future consortia. In the lead article in this issue he describes how he went about building the CINCH rare disease consortium, how the Data Management Coordinating Center (DMCC) interacted with him to facilitate this and some of the progress that has been made due to the effectiveness of this program. Dr. Robert C. “Berch” Griggs is chair of the Department of Neurology at the University of Rochester and is current president of the American Academy of Neurology.
Spotlight is edited by David Robertson, MD, Elton Yates Professor of Medicine, Pharmacology and Neurology and Director of the Clinical and Translational Research Center of Vanderbilt University's Clinical and Translational Science Award (CTSA). He is PI of the Autonomic Disorders Consortium. Cindy Dorminy, MEd LPN is Assistant Editor.
The staff of Spotlight are enthusiastic about the potential of our new publication to enhance communication among those interested in treatment and cure of rare diseases. We are very interested in your thoughts about how Spotlight can be improved. If you have suggestions for future issues, please let us hear from you. You can send your comments to RDNWebmaster@epi.usf.edu.