Introducing Spotlight on Rare Diseases
Welcome to the inaugural issue of Spotlight on Rare Diseases. This eNewsletter highlights the mission and dynamism of the NIH Rare Diseases Clinical Research Network (RDCRN). The RDCRN comprises 19 Consortia, each focused on a series of related rare diseases within a specific medical discipline. These Consortia involve 200 US and foreign centers. Thus, outreach to patients with these rare diseases covers a broad geographic area.
The purpose of Spotlight is to provide a single resource for information on the activities and achievements of the RDCRN. Personnel within the NIH and other funding institutions will be able to review some of the valuable work in rare diseases research of RDCRN investigators in one publication. Spotlight will also serve to educate members of the rare disease community who are not part of the Network, so that they may better understand the RDCRN model. This will allow new investigators whose patient constituencies are not yet represented in the RDCRN to be in a better position to compete successfully to become a part the Network in the future.
A second purpose of the Spotlight is dissemination of information and promotion of networking opportunities among the members of the 19 Consortia. Each issue will highlight the activities of one of the 19 Consortia, beginning with those already in their second period of funding. In our next issue we will highlight Robert C. Griggs's Clinical Investigation of Neurologic Channelopathies Consortium (CINCH) as an introduction to the operation of a successful Consortium, and the benefit it receives from the many services provided by Jeffrey Krischer's Data Management and Coordinating Center (DMCC) in Tampa. Conferences and workshops likely to be of broad interest to our readership will be included in each issue and opportunities to share ideas among colleagues will be encouraged.
David Robertson, MD
Cindy Dorminy, MEd, LPN
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 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