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What Research is Being Done on Rett Syndrome?

written by: Michelle Burton • edited by: Paul Arnold • updated: 11/27/2010

The National Institute of Neurological Disorders and Stroke (NINDS) and other institutes of the National Institutes of Health (NIH) have conducted a number of studies on Rett syndrome. Diet, drugs, diagnosis methods and managing symptoms are just a few of the highlights involved in current trials.

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    About Rett Syndrome

    There is no cure for Rett syndrome, although symptoms of the condition may be treated through speech and physical therapy and through medications that may help alleviate depression and control anxiety. Researchers conclude that the Rett syndrome is rare and occurs almost exclusively in girls. Only one in every 15,000 females will be born with Rett syndrome.

    Researchers at the National Institute of Neurological Disorders and Stroke (NINDS) and other institutes of the National Institutes of Health (NIH) are currently conducting a number of clinical trials throughout the U.S. and worldwide. These trials are aimed at developing therapies to manage specific symptoms of the condition and to help provide more effective methods of diagnosis.

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    Rett Syndrome Studies

    At the time of writing this article (November 2010), there were around sixteen studies in progress or completed ranging from drug and diet effects on Rett syndrome to pathogenesis and genetic and physical characteristics of the condition. Because Rett syndrome is classified as a pervasive developmental disorder (which means it is classed as an autism spectrum disorder and childhood disintegrative disorder), many of the studies include research and tests that also focus on autism.

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    Images

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    What Research is Being Done on Rett Syndrome?

    *The most recent research studies being done on Rett syndrome are as follows:

    • ·Pilot Study of the Effects of the Desipramine on the Neurovegetative Parameters of the Child with Rett Syndrome Interventions: Drug: Administration of a high dose of desipramine; Drug: Administration of a low dose of desipramine; Drug: Administration of a placebo

    • ·Active, not recruiting: The Role of Family Functioning in Adaptation to Being a Caregiver of an Individual with Rett Syndrome

    • ·Recruiting: Creatine Metabolism in Rett Syndrome

    • ·Recruiting: Trial of Dextromethorphan in Rett Syndrome. Interventions: Drug: dextromethorphan; Drug: Delsym

    • ·Recruiting: Genetic and Physical Characteristics of Rett Syndrome

    • ·Recruiting: Independent Studies of Dextromethorphan and Donepezil Hydrochloride

    • ·Screening for Studies on Autism Spectrum Disorders

    • ·Completed: Effects of Creatine Supplementation in Rett Syndrome. Interventions: Dietary Supplement: Creatine monohydrate; Dietary Supplement: Placebo

    • ·Completed: Metabolic Evaluation of Nutrition in Rett Syndrome

    • ·Completed: Functional Abilities in Rett Syndrome

    • ·Completed: Study of Cardiac and Paroxysmal Abnormalities in Rett Syndrome

    • ·Completed: Nutritional Aspects of Rett Syndrome. Intervention: Procedure: Metabolic assessment with body composition evaluation

    • ·Completed: Study of the Pathogenesis of Rett Syndrome. Interventions: Drug: dextromethorphan; Drug: topiramate; Drug: Donepezil

    • ·Completed: Advanced Grandparental Age as a Risk Factor for Autism

    • ·Completed: Predictors of Caregiver Adaptation to Pervasive Developmental Disorders

    • Completed: A Study of the Effectiveness and Safety of Risperidone Versus Placebo in the Treatment of Children With Autistic Disorder and Other Pervasive Developmental

    To receive information regarding what research is being done on Rett syndrome or to enroll in any of the studies listed as “recruiting" or to enroll in future studies, please visit the official National Institute of Neurological Disorders and Stroke (NINDS) website at http://www.ninds.nih.gov/.

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    References

    "Rett syndrome." Encyclopædia Britannica. 2010. Encyclopædia Britannica Online. 23 Nov. 2010 http://www.britannica.com/EBchecked/topic/500154/Rett-syndrome.

    *National Institute of Neurological Disorders and Stroke. National Institutes of Health. By Office of Communications and Public Liaison, National Institute of Neurological Disorders and Stroke, National Institutes of Health. 26 Oct. 2010 http://www.ninds.nih.gov/disorders/rett/rett.htm#What_research_is_being_done.

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