Research

We are proud to support ongoing research projects that contribute to improving the lives of those with Fragile X Syndrome, and have helped many of our members to get involved. Below you can read about the latest findings from research projects we have supported, as well as other research projects from around the world.

We encourage our community to get touch and share any ideas and types of research that may prove useful for the charity to explore. You can contact us directly and join our Facebook group below to discuss your research ideas with other members.

Research Facebook Group

You can join our Facebook group to share information about research into Fragile X, including Fragile X Syndrome, FXTAS, FXPOI and the Fragile X premutation more broadly. Our hope is that this group will facilitate dialogue about research and promote awareness of opportunities to take part.

The group is for researchers, families and anyone interested in research into Fragile X Syndrome and the Fragile X premutation. The group provides a forum for discussion about the latest research and a space for conversations about the types of research people would like to see.

We regularly post information about all research projects that have been approved by the Fragile X Society Research Committee, enabling group members to interact directly and ask any questions about participation.

Join our Facebook Group

Research Policy

The Fragile X Society welcomes research into all aspects of Fragile X Syndrome (FXS) and Fragile X Premutation-Associated Conditions. In order to safeguard our families and members we have instituted the following research policy governing which research projects we can disseminate to our members.

Research Policy

Take Part in Research

The Fragile X Society aims to support research and has so far been involved with over 60 projects and counting! By finding out more about Fragile X Syndrome, we hope that support for people with Fragile X and their families can be improved. Find out more about opportunities to take part in current research projects.

Take part in research

Research News

Nov 142 min read

What are the challenges of developing independence and supporting the quality of life of adult males affected by Fragile X Syndrome? Cardiff University

What are the challenges of developing independence and supporting the quality of life of adult males affected by Fragile X Syndrome? I...

Oct 221 min read

Experience of Navigating Autism Assessment

The University of Surrey is currently conducting a research study that aims to explore the experiences of parents and carers who have...

Sep 31 min read

Touch FXS Study

TouchFX study - Touch sensitivity in fragile X syndrome Researchers from the Patrick Wild Centre are currently looking for volunteers to...

Aug 291 min read

Early Pathways to Independence in Numeracy for Children with Genetic Syndromes - MathMIND

Dr Gaia Scerif (Uni of Oxford), Dr Emily Farran (Uni of Surrey), and Dr Jo Van Herwegen (UCL) are currently looking for volunteers (4-9...

Aug 271 min read

Help improve teacher training

University of Surrey are looking to improve a free teacher training resource. This resource will be focused on supporting children with...

Jul 31 min read

Shape Research, Change Lives

Shape Research, Change Lives are setting priorities in genetic syndrome research. Below we have added some of their supporting documents....

Mar 8, 20232 min read

International Survey on Pain Experience

An update from Dr Natali Bozhilova on international survey on pain experience in people with Prader-Willi, Williams and Fragile X syndromes

Feb 28, 20232 min read

The importance of psychological support for parents of children diagnosed with a rare condition

An udpdate on a study into the importance of psychological support for parents/caregivers of children with a rare condition at diagnosis

Feb 23, 20232 min read

Men with the Fragile X premutation, who have less than 70 CGG repeats, less likely to develop FXTAS

An update from Dr Natali Bozhilova on a recent study

Feb 1, 20232 min read

The CONNECT-X Study

Efficacy and safety of cannabidiol-based hand gel (ZYN002) for young people with Fragile X Syndrome following a recent study.

Jan 3, 20232 min read

Newborn bloodspot screening

An update from the Chair of our Board of Directors, Kirsten Johnson

Nov 8, 20221 min read

The IGPrare European study

IGPrare European study recently explored experiences of families when sharing their diagnosis with family members: what were the results?

May 10, 20222 min read

Update on inclusive terminology for Fragile X conditions

In April 2022, the term ‘mental retardation’ was officially removed from the expanded name of FMR1, and more inclusive names adopted.

Apr 13, 20222 min read

Eradication of 'mental retardation' from language describing Fragile X Conditions

New and inclusive terminology to be adopted in scientific and clinical literature, improving respect for neurodiversity

Mar 24, 20222 min read

Barriers to participating in clinical trials

What are they and how can they be addressed by researchers of medication trials for Fragile X Syndrome?

Mar 16, 20222 min read

Road to Recovery Project: overview, update and final recruitment call

Carers and their children with learning disabilities invited to share their experiences of COVID-19 pandemic using fun, inclusive activities

Feb 24, 20222 min read

Whole Genome Sequencing (WGS) to detect repeat expansion disorders including Fragile X Syndrome

New research paper published in The Lancet which demonstrates that whole genome sequencing (WGS) can quickly detect neurological conditions

Feb 23, 20222 min read

Measuring electrical activity in the brain may help in development of drug therapies for Fragile X

Measuring electrical activity in the brain may help in development of drug therapies for Fragile X in new study from the Patrick Wild Centre

Jul 14, 20204 min read

Social Interactions in Children with Fragile X Syndrome and Other Neurodevelopmental Conditions

Social Interactions in Children with FXS and Other Neurodevelopmental Conditions: a research update

Jul 2, 20203 min read

Attention, Learning and Memory in young people with Fragile X syndrome: Does social context matter?

Attention, Learning and Memory in young people with fragile X syndrome: Does social context matter?

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01371 875100

Research

Research Facebook Group

Research Policy

Take Part in Research

Research News

Become part of our growing community!