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NIH Funding Awarded for Participation in the NIH Rare Disease Clinical Network.

PPA Plays important role in Launch of CINCH.

At the recent Meeting of the Periodic Paralysis Association, Louis Ptacek shared an announcement provided by Robert Griggs, concerning the Participation of the PPA in The Clinical Investigation of Neurologic Channelopathies (CINCH).

The CINCH center consists of 7 sites: Brigham and Women's, National Institute of Neurologic Disease and Stroke (NINDS), UCLA, UCSF, University of Kansas Medical Center, University of Texas Southwestern at Dallas and the University of Rochester School of Medicine & Dentistry.

The larger NIH Rare Disease Clinical Network consists of 7 scientific centers: National Children's Medical Center (Washington, DC), Baylor College of Medicine, Cleveland Clinic Foundation, Boston University School of Medicine, Weill Medical College, Children's Hospital Medical Center (Cincinnati) and University of Rochester and a data technology coordination center: Moffitt Cancer Center in Tampa, FL.

See additional details at:


The CINCH, multi-center collaboration is funded for the period September 29, 2003 through September 28, 2008.

CINCH will study three rare channelopathies:
Andersen's syndrome, non-dystrophic myotonias and episodic ataxias. According to Robert Griggs at Rochester, CINCH is likely to expand the list to include other rare channelopathies as progress is made on the first targets.

CINCH will include longitudinal studies and pilot treatment trials, establish registries, train new investigators, and work closely with the Periodic paralysis Association, the Muscular Dystrophy Association, and the National Ataxia Foundation.

Section Last Modified:
8/22/2010 10:37 PT