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

  • This research seeks to understand how protein formation in the brain is affected in Fragile X syndrome (FXS). Researchers will measure the rate at which the brain makes proteins (protein synthesis) and will identify specific parts of the brain affected in FXS. In the future, measurement of protein synthesis in FXS may help us to develop and test new therapies. The study enrolls eligible young men with FXS, ages 18-24, from around the world, and includes: One visit, lasting several days, to the NIH Clinical Center, in Bethesda, Maryland. Assessment by physicians Blood draw, Two brain scans (PET & MRI), possible sedation Travel, food, and... » FULL ARTICLE

    Posted on October 26, 2014 | Categories : Opportunities for families | Comments Off on Fragile X Syndrome: NIH Research Study
  • A study summary of: A Comparison of Family Financial and Employment Impacts of Fragile X Syndrome, Autism Spectrum Disorders, and Intellectual Disability The full study is available in Research and Developmental Disabilities, July 2014. The CDC also provides a summary of the study's key findings. There are a variety of factors that play a role in how having a child with a disability such as Fragile X syndrome (FXS) affects the family. These factors include characteristics of the child (e.g., age, severity of disability, extent of behavior problems), the... » FULL ARTICLE

    Posted on October 9, 2014 | Categories : News Reports and Commentaries | Comments Off on Comparison of Financial & Employment Impacts of FXS, Autism & ID
  • Alcobra is pleased to let you know about a new clinical trial that is currently underway and recruiting patients with Fragile X syndrome. The study is seeking male and female participants between the ages of 15 and 55 who have been diagnosed with Fragile X syndrome. This clinical trial is studying the effects of a medicine on the cognitive and inattentive symptoms in people with Fragile X syndrome. The trial is taking place in 12 U.S. cities. You will not be charged money to participate in this trial. In fact, expenses for travel... » FULL ARTICLE

    Posted on October 2, 2014 | Categories : Opportunities for families | Comments Off on Alcobra Clinical Trials in 12 Cities
  • Does someone you love have Fragile X syndrome (FXS)? If so, please know that we are currently enrolling individuals with FXS between 15 and 55 years of age to participate in a medical research study. In this research study, we will evaluate the effects of the investigational drug Metadoxine Extended Release (MDX) on the symptoms of ADHD in individuals with Fragile X. There is no cost to participate in our research study, and compensation for time and travel may be available. To learn more about our research study, please contact: Libby Bliss, Research Manager 206-884-1488 Seattle... » FULL ARTICLE

    Posted on September 30, 2014 | Categories : Opportunities for families | Comments Off on Seattle Children’s Hospital Metadoxine trials
  • Neuren Pharmaceuticals is pleased to inform you of an opportunity to participate in a clinical trial for adolescents and adults with Fragile X syndrome. This clinical trial is testing an investigational medication, NNZ-2566, as a targeted treatment for Fragile X syndrome (FXS).  The purpose of this study is to assess the safety and efficacy of two dose levels of NNZ-2566 when compared to placebo in adolescent and adult males (ages 14-40) who have been diagnosed with FXS.NNZ-2566 has an entirely novel mechanism of action compared with other drugs that have been... » FULL ARTICLE

    Posted on September 29, 2014 | Categories : Opportunities for families | Comments Off on Clinical Trial sponsored by Neuren Pharmaceuticals enrolling participants with Fragile X syndrome
  • The “gray zone” allele in the gene is so named because much about it remains unknown. The color evokes an image of the middle ground between stark black and white, a mixing ground of two extremes. Or perhaps one envisions gray skies, looming and dull over the horizon. Surprisingly, the gray zone is anything but dull, and instead represents a burgeoning area of research in Fragile X-associated Disorders. An allele is a variant of a gene, and we each possess two alleles for each gene, excluding the genes that are on the sex... » FULL ARTICLE

    Posted on August 26, 2014 | Categories : Genetics,News Reports and Commentaries | Comments Off on FMR1 Gray Zone Allele: What Do We Know About It?
  • It's beginning to feel like both the scientific world and the rest of the world are coming around to the idea (a fact, really) that Fragile X is about a lot more than just Fragile X syndrome. Our community knows that it's about and , too - but we’re also discovering the and are so significant that once there's any mutation in the FMR1 gene, there are health impacts. Whether it's cognitive, emotional, physical, very mild or very significant, when... » FULL ARTICLE

    Posted on August 12, 2014 | Categories : Keeping You Informed,News Reports and Commentaries | Comments Off on Fragile X Premutation: A Bigger Part of the Conversation
  • A message from the Jeffrey Cohen, NFXF interim executive director. >> I recently attended a meeting focusing on "The Future of Fragile X Public Health Research.” One of the hot topics was how the collection of public health data can improve how we measure success in clinical trials results.... » FULL ARTICLE

    Posted on July 3, 2014 | Categories : From the Executive Director,Keeping You Informed,News Reports and Commentaries | Comments Off on The Future of Fragile X Public Health Research
  • A few months ago we asked the parents of children and adult offspring with Fragile X syndrome (FXS) in the National Fragile X Foundation (NFXF) community to answer a few questions. We asked what parents thought were the most important problem behaviors seen in their children and whether they had faced a decision about seeking medication for the behavior(s). Here we present some of the information we received from the NFXF community. The information will help us learn more about the issues and challenges families living with FXS face today. There were a whopping 704 responses to our request! The average age of... » FULL ARTICLE

    Posted on June 18, 2014 | Categories : FXCRC and Clinics,News Reports and Commentaries | Comments Off on Parent Survey Results: Insights To Appear in Research Grant
  • A new study reveals that increasing CGG repeat length in the premutation range (55-200 repeats) doesn’t necessarily put one at increasing risk of psychiatric disorders -- the relationship is more complex. The study by Danuta Z. Loesch, MD, PhD and colleagues represents a collaboration between medical centers and universities in Australia and the U.S. A total of 117 women aged 18-79 in Australia and 182 women aged 19-86 in the U.S. identified through their family trees participated in the study. These women completed a questionnaire called the Symptom Checklist-90-Revised (SCL-90-R), which is... » FULL ARTICLE

    Posted on June 9, 2014 | Categories : News Reports and Commentaries | Comments Off on Does CGG Repeat Length Relate to Psychological Symptoms?
  • The future of Fragile X research depends on inspiring and encouraging new generations of researchers to push Fragile X forward. That’s why we started the Summer Student Fellowship, which is awarded to a selected group of studies from young researchers. Today, we’re proud to announce the recipients for this year’s awards, as well as the results and summaries of last year’s studies. » FULL ARTICLE

    Posted on May 22, 2014 | Categories : Previously Funded,Results,Summer Student Fellowship,Summer Student Fellowship Reports | Comments Off on William & Enid Rosen Summer Student Fellowship: 2014 Awards and 2013 Summaries
  • Alcobra Ltd will be conducting a clinical trial of Metadoxine Extended Release (MDX) in adults and adolescents, 15 to 55 years old, with Fragile X syndrome. The planned Phase IIb MDX clinical trial will be a multi-center, randomized, placebo-controlled study, conducted primarily in the US. The study is supported by positive data collected from multiple earlier animal studies using metadoxine. Results from these studies demonstrated significant improvement in behavioral and cognitive outcomes in mice based on testing and performance of memory, learning, and social interaction. » FULL ARTICLE

    Posted on May 21, 2014 | Categories : Opportunities for families | Comments Off on Alcobra Ltd Announces a New Clinical Trial Enrolling Subjects with Fragile X Syndrome in 2014
  • Earlier this month Novartis released results of the Phase IIb/III studies with mavoglurant (AFQ056) in adolescents with Fragile X syndrome (FXS). The trial results from the study of adults were released late last year. Both studies did not meet the primary endpoint of showing significant improvement in abnormal behaviors compared to placebo. Earlier today the company announced that it will no longer continue development of mavoglurant in FXS, nor will it continue the long-term extension studies of mavoglurant in FXS. The company did however make clear that given the significant unmet medical... » FULL ARTICLE

    Posted on April 24, 2014 | Categories : News Reports and Commentaries,Novartis AFQ056 | Comments Off on Novartis Announces Results of Mavoglurant (mGluR5) (AFQ056) Clinical Trials and the Conclusion of the Long-Term Extension Study
  • Researchers at UC Davis have identified a new feature of the genetic mutation responsible for the progressive neurodegenerative disorder Fragile X-associated tremor/ataxia syndrome (FXTAS) — the formation of “R-loops,” which they believe may be associated with the disorder’s neurological symptoms, such as tremors, lack of balance, features of Parkinsonism and cognitive decline. » FULL ARTICLE

    Posted on April 18, 2014 | Categories : News Reports and Commentaries | Comments Off on Progressive Neurodegenerative Disorder (FXTAS) Linked to R-loop Formation, UC Davis Researchers Find
  • We are recruiting a small group of mothers and their children with Fragile X syndrome, between the ages of 10- and 17-years, to participate in a pilot study of a parent-implemented language intervention. The goal of this project is to teach each mother strategies which can be used to support spoken language development in their child with Fragile X syndrome. » FULL ARTICLE

    Posted on April 15, 2014 | Categories : Opportunities for families | Comments Off on Parent-Implemented Spoken Language Intervention
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