News, Reports and Commentaries
Following are brief articles, reports, summaries, overviews and commentaries of research related to Fragile X-associated Disorders. The National Fragile X Foundation posts content only from reputable researchers or research institutions. In cases where summaries or overviews are provided, they are written for the NFXF by members of our Scientific & Clinical Advisory Committee or other members of the Fragile X research community. These are designed to acquaint the reader with the latest research information while providing a balanced assessment of its relevance to the treatment and eventual cure expected for Fragile X. Whenever possible, we will provide a link to a more detailed source of information for those who wish to understand the more technical aspects of the research findings. Commentary and opinion pieces are included whenever we feel they add to the thoughtful discussion and greater understanding of research.
Latest News
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Suburban Research Associates: Investigational Medicine RO4917523
107 Chesley Drive, Unit 4 Media,PA19063 (610) 891-9024 (610) 891-9699 fax www.suburbanresearch.com Dear Parent or Caregiver, We are currently seeking volunteers who have fragile X syndrome to take part in a research study. The purpose of the study is to investigate how a new investigational medicine called RO4917523 works in treating people with fragile X syndrome. It is possible that your son or daughter may be suitable to
. . . Read More: Suburban Research Associates: Investigational Medicine RO4917523
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Autism Speaks Lists Fragile X Syndrome Research on its Top Ten Autism Research Advances of 2012
Autism Speaks, the world's largest autism advocacy organization, recently released it's Top Ten Autism Research Advances of 2012. Included in this list is Fragile X research, mainly two drug studies of Arbaclofen.
. . . Read More: Autism Speaks Lists Fragile X Syndrome Research on its Top Ten Autism Research Advances of 2012
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Opportunity from Novartis Pharmaceuticals
Dear Friend of National Fragile X Foundation: We would like to inform you of clinical research studies to find out if a new investigational drug is safe and has beneficial effects in people who have fragile X syndrome. This investigational drug is not yet available on the market, because it has not been approved in the United States by the Food and Drug Administration (FDA), or any
. . . Read More: Opportunity from Novartis Pharmaceuticals
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Seaside Therapeutics Harbor-C Trials
Seaside Therapeutics is studying the science of the brain and working to deliver treatments that improve the underlying causes of developmental disorders like fragile X syndrome. Right now, Seaside is testing an investigational medicine called STX209 (arbaclofen) for individuals with fragile X syndrome with social impairment. Thanks to the dedication and efforts of families, one of the clinical trials is almost complete.
. . . Read More: Seaside Therapeutics Harbor-C Trials
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Helping Young Children With Fragile X At Home
Teaching parents how to use an autism-based intervention with their child at home Funded by the National Fragile X Foundation Researchers at the UC Davis MIND Institute (David Hessl, Ph.D., Principal Investigator and Laurie A. Vismara, Ph.D., Co-Principal Investigator) are testing an autism-specific, behavioral intervention model with families of young children with fragile X syndrome. Parents will learn
. . . Read More: Helping Young Children With Fragile X At Home
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Two New Grants Awarded to Study Behavior Intervention and the Premutation In Women
Dr. David Hessl of the UC Davis MIND Institute will be undertaking a project to extend autism behavioral intervention to young children with fragile X syndrome. And Dr. Stephanie Sherman at Emory University is attempting to better understand the health consequences of the FMR1 premutation in women.
. . . Read More: Two New Grants Awarded to Study Behavior Intervention and the Premutation In Women
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New Clinical Trial for Adolescents and Adults with Fragile X Syndrome
Kennedy Krieger Institute is looking for adolescents and adults, ages 16 through 50 years, with fragile X syndrome to participate in a research study. PURPOSE: The purpose of this study is to determine if an investigational drug is an effective and safe treatment for symptoms associated with fragile X syndrome. PROCEDURES: Participation in this study will require up to 8 visits (each lasting 2-7 hours) to
. . . Read More: New Clinical Trial for Adolescents and Adults with Fragile X Syndrome
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Clinical Trials for Arbaclofen at Kennedy Krieger Institute
Dear Families and Friends, We would like to invite you to participate in a research study at Kennedy Krieger Institute in Baltimore, Maryland. The research study will determine if an investigational drug called arbaclofen is an effective treatment for social withdrawal symptoms associated with fragile X syndrome. Eligible participants will be male and female, and in the age range of 5 through
. . . Read More: Clinical Trials for Arbaclofen at Kennedy Krieger Institute
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Infants with FMR1 Premutation or Fragile X Syndrome
The University of South Carolina’s Neurodevelopmental Disorders Lab is currently recruiting families with infants 10 months and younger who have been diagnosed with the FMR1 premutation or full mutation Fragile X. We are interested in learning about the early development of infants who are at risk for developmental delay to promote early diagnosis and treatment for these children and their families.
. . . Read More: Infants with FMR1 Premutation or Fragile X Syndrome
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Cholesterol Drug May Treat Fragile X Syndrome
The investigator cited in this article, Dr. Emily Osterweill, was previously funded by the National Fragile X Foundation for her work on mGluR5. -- Cholesterol drug may treat fragile X syndrome -- A cholesterol-lowering drug called lovastatin prevents seizures in mice that model fragile X syndrome, according to a poster presented Sunday at the 2012 Society for Neuroscience annual meeting in New Orleans.
. . . Read More: Cholesterol Drug May Treat Fragile X Syndrome