Tag: Research

Dr. Craig Erickson Discusses the Drug Acamprosate for the Treatment of FXS

by NFXF

Acamprosate, a drug used to treat alcohol abuse, improves communication and social behaviors associated with a common form of autism. IU autism researcher Craig Erickson, MD, will discuss his ongoing study of acamprosate and Fragile X syndrome, the most frequent, single genetic cause of autism. Listen or download podcast Dr. Erickson is assistant professor of



Published: Newborn, Carrier, and Early Childhood Screening Recommendations for Fragile X

by NFXF

The NFXF is pleased to see the recent publication of “Newborn, Carrier, and Early Childhood Screening Recommendations for Fragile X” in the prestigious “Pediatrics: Official Journal of the American Academy of Pediatrics.” At the urging of the CDC, and with their support, the NFXF’s genetics specialist, Liane Abrams, organized and contributed to a year-long effort,



Insight on Evidence-based Medical and Therapeutic Intervention

by NFXF

A discussion for parents of children with special developmental needs about evidence, consensus and anecdotal-based interventions. After more than four decades of working with parents of children with special developmental needs, I’ve learned that they often find it difficult to know what the best approaches or interventions are to help their children. Conflicting statements, recommendations



General Guidelines for Research Recruitment Postings

General Guidelines for Research Recruitment Postings Content approved by the National Fragile X Foundation. The research is relevant to Fragile X. Appropriate/Relevant approvals from the poster’s institution or governing body are noted. The announcement is from a known or recognized researcher, institution or other research body. In instances when the submitter is not recognized by

Clinical Trials From Start To Finish

by NFXF

Webinar: Clinical Trials from Start to FinishThursday, August 10, 20173:00 PM Eastern | 2:00 PM Central 1:00 PM Mountain | 12:00 PM Pacific Clinical research is a scientific investigation about human beings. It can be interventional or observational. Most of what we know about medicine, and all of the treatments we use, are the result

Vanderbilt: Fragile X/Angelman Syndrome Study

by David Salomon

girl blowing dandelion
This announcement has been posted as a courtesy by the National Fragile X Foundation (NFXF) on behalf of Vanderbilt University Medical Center. The announcement and the parties conducting and sponsoring the research meet guidelines established by the NFXF regarding relevancy and appropriateness to Fragile X. The NFXF takes no position and makes no claims as

Clinical Trials From Start to Finish

by David Salomon

First thing’s first: What is clinical research? Clinical research is a scientific investigation about human beings. It can be “interventional” (like the search for a new medicine) or “observational” (like filling out a questionnaire). Clinical research also involves people (no mice here!). Most of what we know about medicine, and all of the treatments we

Clinical Trial: AFQ056 for Language Learning in Children with Fragile X Syndrome (NN107)

NN107 FX-LEARN is currently looking to enroll children with Fragile X Syndrome (FXS) for a research study conducted by the Network for Excellence in Neuroscience Clinical Trials (NeuroNEXT). Dr. Elizabeth Berry-Kravis at Rush University is the Protocol Principal Investigator and is leading this national study.  The National Institute of Neurological Disorders and Stroke (NINDS), a



Survey: Communication with Children Unaffected by Fragile X

by NFXF

This announcement has been posted as a courtesy by the National Fragile X Foundation (NFXF) on behalf of University of Maryland. The announcement and the parties conducting and sponsoring the research meet guidelines established by the NFXF regarding relevancy and appropriateness to Fragile X. The NFXF takes no position and makes no claims as to

Consensus of the Fragile X Clinical & Research Consortium on Clinical Practices

The Guidelines represent expert consensus and not evidence-based studies. The clinical committee of the Fragile X Clinical & Research Consortium (FXCRC) could be thought of as a “consensus panel” since virtually every clinician in the USA seeing and managing a large number of patients with Fragile X syndrome and other Fragile X-associated Disorders is represented.



Reasons to Visit a Clinic

While every Fragile X clinic is set up a little differently, they all offer similar services. They are staffed by people who understand Fragile X. Examples of evaluations offered at clinics through an initial intake include: medical, speech, occupational, physical and behavioral therapy, and genetic counseling. Additional specialist services may include referrals to psychiatrists, psychologists, neurologists, cardiologists,

Study: Cognition, Balance, and Walking Patterns in Fragile X Premutation Carriers

This announcement has been posted as a courtesy by the National Fragile X Foundation (NFXF) on behalf of Rush University Medical Center. The announcement and the parties conducting and sponsoring the research meet guidelines established by the NFXF regarding relevancy and appropriateness to Fragile X. The NFXF takes no position and makes no claims as

Study: Come Interact and Play Music with our Avatar!

(Above) Example of participant interacting in real-time with our avatar. What is the study for? This study investigates the interactions between an avatar and a person in our custom body suit. We investigate, in a playful setting, how to improve the person’s body awareness to improve motor control.Who can participate? Participation is open to all,

Studies of Brain/Body Interaction at Rutgers University

What is the study for? The goal of this study is to provide a comprehensive profile of the nervous systems in order to understand interactions between the brain and body, while an individual walks naturally and while breathing at a slow controlled pace. We aim to study these interactions among a variety of populations, from