Opportunities to Take Part in Fragile X Research Studies
The Fragile X Society aims to support research, having supported 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.
Below is information about current studies that the Fragile X Society have agreed to support. If you would like to help to support Fragile X Research, please the information below to decide whether you would like to take part in these studies.
NEW! We have a brand new Fragile X Society UK Research Facebook page. If you are a family member, researcher or just want to engage and learn more about research into Fragile X syndrome, please click the link above and join the discussion! Those interested in taking part in any of our current studies can ask the researchers questions about them and you will also find news about recent research from around the world.
If you are a researcher and have a new project, please see our Guidelines for supporting research and instructions for contacting us.
Current Research Projects
Anxiety Measure Research Project
A research project to design a clinical assessment tool to identify anxiety and emotional distress in individuals with moderate to profound intellectual disabilities
Dr Jane Waite and her team at Aston University are currently running a research project with the NHS to design a clinical assessment tool to identify anxiety and emotional distress in individuals with moderate to profound intellectual disabilities. They are asking for families of children and adults with fragile x syndrome to take part so that the tool can be adapted for people with fragile x and so the results will be more meaningful for those with the syndrome.
The research involves completing an online questionnaire which should take no longer than 1 hour. Aston University are also providing a £5 shopping voucher to those who take part. To be eligible for the study, the person you care for must:
- be over the age of 4
- speak few or no words OR have a moderate-profound intellectual disability
If you have further questions, please contact Jane Waite.
Community Views on Clinical Trials: Survey
A short survey for family members and carers of somebody with fragile X syndrome and those with fragile x syndrome to ask about current medications and thoughts on future medicines
The team at the Patrick Wild Centre aims to improve understanding of Fragile X syndrome in order to help improve outcomes for those affected.
To achieve this, they would like the involvement and support of people with Fragile X syndrome and their families. They invite you to take part in a short survey so they can find out more about your needs and opinions on research.
Please take your time to read the information sheet before choosing whether you wish to take part. The survey will only take a few minutes to complete.
You can participate in the survey online, here.
If you have any questions or would like to find out more, please contact Sarah Eley.
The Patrick Wild Centre eHub
A study to collect detailed information about large groups of people with Fragile X
Dr Andy Stanfield and Dr Sonya Campbell are recruiting for a new online study, called the Patrick Wild Centre eHub. The aim of the eHub is to collect detailed information about large groups of people with fragile X, the premutation and a comparison group using short, widely used surveys which will then be repeated every 2 years. The idea is to gradually build up a rich picture about how these conditions affect people and how this might change over time.
More information about the study is available here.
You can sign up directly here.
Cognitive strengths and weaknesses in autism and related conditions
Research to help understand more about the social difficulties some boys with FXS experience
The Fragile X Society is pleased to be supporting the following research from Dr Jo Moss and Dr Katherine Ellis:
"Cognitive strengths and weaknesses in autism and related conditions"
Researchers at the University of Surrey are looking for boys with FXS aged 4-17 years to take part in some research tasks online over a video-link. The aim of the research is to help us understand more about the social difficulties some boys with FXS experience.
Tasks include vocabulary recognition by playing a picture game, listening to a short story and answering a few questions and watching some videos. The tasks can be completed over a number of sessions to suit the family. There will be an Amazon voucher of £20 as a thank you for taking part.
You can download an information sheet with further details, and a parent information and consent form . If you are interested in taking part, please get in touch with Dr Katherine Ellis () or Beth Webster ().
The Neuro-GD Study
A study to help better understand how different neurodevelopmental conditions relate to each other
We are currently looking for volunteers with fragile X syndrome (age 3-65 years) to join a study to help better understand how different neurodevelopmental conditions relate to each other. We hope that this study will make it easier for us to develop and test new therapies for Fragile X and other neurodevelopmental conditions in the future.
The study involves a completing a clinical interview, doing some cognitive tests (puzzles) and having an EEG. We will give you a personalised feedback report based on some of the questionnaires and cognitive tests that might be helpful. Volunteers aren’t required to complete all assessments in order to be involved – they can complete as many as they want / are able to.
These tests would normally be done at our research centre in Edinburgh however due to coronavirus we will initially get individuals to complete the clinical interview and the questionnaires by video-call. We will then hopefully schedule a trip to Edinburgh to complete the other assessments; with travel/accommodation costs being reimbursed.
We are also interested in recruiting a comparison group who do not have Fragile X to complete these same assessments.
If you might be interested in taking part or would like to find out more please get in contact with either Damien Wright on 0131 537 6431 or , or Aisling Kenny at .
More information is also available at
You, Your Health and Your Views Research
Are you interested in undertaking some paid research?
We have recently received a request from a research company (working on behalf of Genomics England) that are currently looking to speak to parents of children with specific genetic conditions, such as Fragile X, to take part in some specialised paid market research between the 4th - 18th of March. The Fragile X Society Research Committee has agreed that the research is legitimate and we are happy for you to take part.
The research is a public dialogue that aims to understand diverse perspectives around newborn genomic screening. As a result of the dialogue, future policies and decisions will better reflect societal views, hopes, concerns, and aspirations. It will also contribute to, and inform policy debates on the ethical and social issues raised by the use of WGS in newborn screening, to ensure the potential benefits and opportunities are realised in a way that is consistent with public values.
Taking part in this project will involve participating in a series of x3 two and a half hour workshops, and x1 three-hour workshop, all of which will take place online and outside of working hours. Participants will also need to complete 3 short tasks between sessions.
As a thank you for your time and for taking part, parents will receive a total of £300 via BACS transfer or payment in vouchers
All opinions shared during these discussions will remain strictly confidential – a report will be written containing an overview of feedback but nothing will be attributed to individuals directly, nor will names be used as part of the reporting process.
If you do wish to take part, please find the link to apply for the research below...
CoIN: COVID-19 Impact on Wellbeing In Families of Children with Rare Neurogenetic Disorders
Principal investigator: Dr. Charlotte Tye (King's College London)
This study is investigating the impact of the Covid-19 pandemic on mental health and wellbeing in families of children with rare genetic and neurodevelopmental disorders.
The CoIN Study will track changes in wellbeing during and after the pandemic in order to understand the specific challenges facing families of children with rare disorders (such as Fragile X Syndrome) and how these relate to mental health and wellbeing. Responses will be rapidly fed back to charities and support organisations, and used to identify and provide better ways of supporting you both now and in the future.
They are inviting those who have a child aged 0-16 years old with a rare genetic or neurodevelopmental disorder to participate in the study. You must be at least 16 years old to take part, and able to understand and communicate in English.
The survey will take up to 40 minutes to complete the first time you do it and about 15 minutes to complete thereafter. They will ask you to complete the survey once per month until children are back in their usual education.
To find out more or take part, visit: https://www.coinstudy.co.uk/