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

  • The parent... » FULL ARTICLE

    Posted on July 19, 2017 | Categories : Opportunities for families | Comments Off on Ball State: Parent Survey Research Project (Evidence-Based Practice)
  • The Journal of Neurodevelopmental Disorders published four important articles this week which describe various steps in Fragile X research from gene discovery to potential treatment in Fragile X syndrome (FXS). FXS is one of the most productive areas of research in neurodevelopmental disorders. Based upon results in mouse models, three pharmaceutical companies stepped up to test novel compounds in controlled trials in FXS. While early pilot studies proved hopeful, larger follow-up studies showed no significant findings in adults or adolescents with fragile X syndrome. As a result, one of the three companies... » FULL ARTICLE

    Posted on June 15, 2017 | Categories : Export,Research | Comments Off on Journal of Neurodevelopmental Disorders Discusses Fragile X Research in New Articles
  • Each year, the National Fragile X Foundation funds one or more summer student research fellowships at $2500 each through the Summer Student Fellowship Research Fund. » FULL ARTICLE

    Posted on May 10, 2017 | Categories : Summer Student Fellowship | Comments Off on 2017 NFXF Summer Student Fellowship Awardees
  • The trial is a Phase 1 Single Dose PK Study in Adolescent Subjects with Fragile X syndrome (FXS) or Angelman syndrome (AS). The primary objective of the study is to evaluate the pharmacokinetics (PK) of OV101 following a single 5 mg dose of OV101 in adolescents with FXS or AS. Secondary objectives are to determine the safety and tolerability of a single 5 mg dose of OV101 in adolescents with... » FULL ARTICLE

    Posted on April 21, 2017 | Categories : Opportunities for families | Comments Off on Ovid Therapeutics: Single Dose Pharmacokinetics (PK) Study
  • Now Recruiting Research Participants: Combining Lovastatin and a Parent-Implemented Language Intervention in a Multimodal Treatment for Fragile X syndrome We invite you to take part in a research study to test the efficacy of a multimodal treatment comprised of the medication Lovastatin or placebo, and a Parent-Implemented Language Intervention (PILI) in children and adolescents with FXS. Who Can Participate? Children and adolescents between the ages of 10-17 diagnosed with Fragile X syndrome. Participants must be able to speak in at least two to three word phrases... » FULL ARTICLE

    Posted on April 20, 2017 | Categories : Opportunities for families,Research | Comments Off on Research: UCD Language Intervention in Treatment for FXS
  • Go to our website with your touchscreen device and click after the welcome screen. Play a short (5-10 minutes) online memory challenge from home on two separate days (complete again 24 hours later). When you come back to play again, make sure to use the same participant code that you received from the first time you... » FULL ARTICLE

    Posted on April 13, 2017 | Categories : Opportunities for families | Comments Off on Research: Memory Study in Children/Youth
  • Participants include individuals between the ages of 6-25 years old with a confirmed diagnosis of... » FULL ARTICLE

    Posted on April 13, 2017 | Categories : Opportunities for families | Comments Off on Research: A Cognitive Test Battery for Intellectual Disabilities
  • Dr. Wendy Machalicek, BCBA-D at the University of Oregon, is recruiting families of boys with FXS, ages two to four years of age, who engage in challenging behavior such as aggression, self-injury or other disruptive behavior, to participate in a study evaluating behavioral interventions to decrease challenging behavior and improve family quality of life. » FULL ARTICLE

    Posted on January 24, 2017 | Categories : Opportunities for families,Research | Comments Off on Challenging Behavior in Two-to Four-Year-Old Boys with FXS
  • You are invited to participate in an online research survey to investigate the journey of fathers, following their child’s Fragile X diagnosis and focusing on their support-seeking behaviors. » FULL ARTICLE

    Posted on January 17, 2017 | Categories : Opportunities for families,Research | Comments Off on Journey of Fathers Following their Child’s Fragile X Diagnosis
  • This study examines women’s experiences with Fragile X carrier screening in the United States. The purpose of our research is to determine how women are being offered carrier screening for Fragile X, when they are offered screening and which healthcare professionals are responsible for returning their results. The study entails interviews with women who have undergone Fragile X carrier screening in the last six months. » FULL ARTICLE

    Posted on January 9, 2017 | Categories : Opportunities for families,Research | Comments Off on Research: Non-Targeted Fragile-X Carrier Testing: Implications for Reproductive Decisions
  • Researchers at the University of Alberta's Department of Pediatrics and Stollery Hospital are completing a study looking at memory in children with a neurodevelopmental disorder or typical development. » FULL ARTICLE

    Posted on December 28, 2016 | Categories : Opportunities for families,Research | Comments Off on University of Alberta: Memory Study in Children/Youth
  • The NFXF Summer Student Fellowship was established to encourage a new generation of Fragile X researchers. By funding young scientists’ research pursuits, we believe that it will continue to push Fragile X into exciting new territory and inspire them to continue important work in this field. » FULL ARTICLE

    Posted on December 21, 2016 | Categories : Summer Student Fellowship Reports | Comments Off on Summer Student Fellowship: 2016 Summaries
  • Jacqueline Del Fierro, a PhD clinical doctoral student at Walden University (under the advisory of Dr. Jesus Tanguma), is conducting a study about parent’s stress and marital satisfaction experience with children with Fragile X syndrome (FXS), due to their shared child care responsibilities. » FULL ARTICLE

    Posted on October 28, 2016 | Categories : Opportunities for families,Research | Comments Off on Survey: Stress and Marital Satisfaction of Parents with Children with Fragile X Syndrome
  • Language is critical in much of daily life. Making friends, learning in school and holding down a job, all require language. For people with more limited language, like so many with Fragile X syndrome (FXS), researchers and clinicians are trying to figure out ways of improving language so that inclusion in more of life’s activities will be possible. » FULL ARTICLE

    Posted on October 19, 2016 | Categories : Research | Comments Off on Language Challenges and Language Possibilities for Fragile X Syndrome
  • The purpose of this study is to explore parent perceptions of clinician-client relationships in speech-language treatment for children. We believe that the development of collaborative working relationships between speech-language pathologists, children receiving treatment, and their parents are important aspects of the treatment process. We are working to develop tools to accurately measure the strength of these relationships. » FULL ARTICLE

    Posted on September 12, 2016 | Categories : Opportunities for families,Research | Comments Off on Parent Perspectives on Rapport in Speech-Language Treatment for Children
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