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

If you would like to know more about the findings of research relevant to Fragile X, then visit our Research News Page.

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Current Research Projects

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 damien.wright@ed.ac.uk, or Aisling Kenny at akenny3@exseed.ed.ac.uk.

More information is also available at https://patrickwildcentre.com/neurogd/

Parental/ Carer’s view on hearing screening in the Fragile X Syndrome population: Feelings, thoughts and opinions on otoacoustic emission screening

Research Team: Maria Kalsoom and Dr Siobhan Brennan (School of Faculty of Biology, Medicine and Health School of Health Sciences, The University of Manchester) 

We are looking for parents or caregivers of individuals with Fragile X Syndrome to give us their views on using this specific hearing test on individuals with Fragile X Syndrome. Participation involves watching a video of the hearing test being conducted and submitting anonymous responses to a newly designed online questionnaire, which asks about whether the participant will be able to sit through the test or if we need to make any adjustments to the test beforehand. This questionnaire will take no longer than 20 minutes to complete (most likely 5-10 minutes). If you prefer giving us feedback on the test over the phone, we are more than happy to arrange for this take place. Please contact us using the information below.

 

The study aims to use your responses to help audiologists and provide them with a guide on adjustments they may need to consider when testing the hearing of individuals with Fragile

X Syndrome. This will be a valuable tool in the future to help us and others understand the safest and easiest way to conduct this test as well as other tests on individuals with Fragile X Syndrome.

 

For more information about the research, please access the participant information sheet with the link below:

https://drive.google.com/file/d/1i7dMMrNT9gR7P9yC2jIsUpZyXB0Uu5qc/view?usp=sharing

 

If you are interested in taking part, please access the questionnaire with the link below:

https://apps.mhs.manchester.ac.uk/surveys//TakeSurvey.aspx?SurveyID=m4KM9p310

 

If you have further questions, please contact Maria Kalsoom on maria.kalsoom@postgrad.manchester.ac.uk

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/

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The Neuro-GD Study

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