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Comprehensive Guide Available for the Management of Scoliosis in Rett Syndrome

New York (Jan 25, 2010)

Rett syndrome is a severe and progressive neurodevelopmental genetic disorder, affecting 1 in 10,000 people in the United States, for which there is no known cure. Children with Rett Syndrome (predominantly females as males rarely survive to term) are born clinically normal, but their development begins to slow and eventually regress between the ages of 7 and 18 months. In addition to symptoms including reduced muscle tone, loss of purposeful use of the hands, and diminished ability to communicate or express feelings, a large proportion of patients with Rett Syndrome develop scoliosis (lateral and rotational deformity of the spine).

David P. Roye, Jr., MD, Chief of Pediatric Orthopaedic Surgery at New York-Presbyterian Morgan Stanley Children's Hospital, recently took part in an effort with an international panel of experts to create the first set of guidelines for the comprehensive management of scoliosis in Rett Syndrome. Information available to parents and clinicians on the management of this disorder had previously been scarce. "Many of the parents of my Rett syndrome patients are faced with a difficult decision regarding surgery for their daughters...it is my hope that these new guidelines will help make that decision a little bit easier, says Dr. Roye. The newly created guidelines take a life-span approach, beginning before the child develops scoliosis and aim to inform families and treating clinicians regarding management from medical, therapy and surgical specialists. These guidelines were recently published in the latest edition of the prestigious peer-reviewed international journal Spine (Spine 2009; 3:E607-E617).

Dr. Roye was also intimately involved in the creation of a booklet entitled Scoliosis in Rett Syndrome: A Collaboration Between Parents, Clinicians and Researchers. This booklet is designed to make the developed guidelines accessible to caregivers and clinicians. It outlines the guidelines in an easy to read format while providing relevant background information and firsthand accounts from patients and clinicians detailing their experiences.

Accessing the Scoliosis in Rett Syndrome Guidelines Booklet

Visit this site or call (212) 305-5475 to access Scoliosis in Rett Syndrome: A Collaboration Between Parents, Clinicians and Researchers.

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