Copyright © 2018 The Fragile X Society

 

Charity registration number 1127861 - The Fragile X Society Registered Charity and Limited Company Registered in England

Charity Registration SC047332 - The Fragile X Society Registered Charity in Scotland
Company registration number 6724061 - Registered office: Rood End House, 6 Stortford Road, Great Dunmow, Essex CM6 1DA

 

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

Stay Calm – New Study – coming soon!

Research Team: Justin Chung and Dr Kate Woodcock (University of Birmingham)

A new study is coming for parents and carers of individuals between the ages of 6 years and 25 years old who have emotional outbursts at least once a month. The aim of this study is to develop a new tool, the Emotional Outburst Questionnaire, for researchers and clinicians to use when gathering information about the characteristics of emotional outbursts. This will be an online or postal questionnaire that parents/carers will be asked to complete. There will be more information to follow.

Cognitive strengths and weaknesses in autism and related disorders – New Study

Research Team: Dr Katherine Ellis and Dr Sarah White (University College London and the University of Birmingham)

Some individuals with fragile X syndrome also have a diagnosis of autism. This new study is looking at how children with fragile X syndrome process information and if they process it in a similar way to children with autism who do not have a known genetic cause for their autism diagnosis. Children and young people aged 4 years and above are invited to participate. This will involve watching some short videos and answering some questions afterwards. Your child’s eye movements will be monitored using eye-tracking technology whilst they watch the videos. More information to follow.

Investigating information processing in adults with and without the fragile X premutation

Research Team: Ishita Chowdhury, Dr Sarah White (University College London) and Dr Jo Moss (University of Birmingham)

Ishita would like to invite mothers, under the age of 50, with the fragile X premutation to take part in a face-to-face study. The activities that you would be invited to do, include completing questionnaires, watching short videos, computer tasks and some paper and pencil tasks.

 

The study sessions will take place at the Institute of Cognitive Neuroscience at University College London and will take about 2 hours to complete. Reasonable travel costs will be reimbursed as will your time and effort.  If travelling to London is difficult for you, please contact Ishita as she may be able to arrange to visit you in your home.

 

The main aims of the study are to find out how people’s brains process information and whether this relates to certain traits associated with the autism spectrum.

 

If you are a mother under the age of 50 with the fragile X premutation and would like to participate in this study or you would like further information, please email Ishita or telephone her on 020 7679 1128.

Flexible scheduling to prevent the development of disabling resistance to change.

Research Team: Dr Kate Woodcock and Siobhan Blackwell

This new study by Dr Kate Woodcock and her research team at the School of Psychology, University of Birmingham aims to develop a new strategy that they hope will prevent the development of some of the difficulties that children can experience with changes to their routines or expectations.

They want to help parents and teachers to structure children’s routines and activities in such a way as children will have the best possible opportunity to develop the cognitive skills that allow individuals to deal with change successfully. This is referred to as flexible scheduling.

The research activities include contributing to the design of the flexible scheduling by taking part in interviews with researchers and focus groups with other participants and researchers.  After the research team have developed a version of the flexible scheduling, they want to refine it through testing so they would ask you to use the programme over a short period so that they can see what is working well and what needs to be changed.

This is a very early stage project.  The objectives at this stage are to develop the flexible scheduling programme and test it to see if it is feasible for families and teachers to use.  Kate and her team want to work with a number of families and teachers to draw on a range of experiences so that they can best design the flexible scheduling to achieve the important objectives outlined above, whilst also being acceptable for the people who are going to use it.

 

If you have a child with Fragile X Syndrome between the ages of 5 and 12 years and think you might be interested in taking part in this study, please get in touch with either Dr Kate Woodcock on 0121 414 6036 or at k.a.woodcock@bham.ac.uk or Siobhan Blackwell on 0121 414 3335 or at S.Blackwell@bham.ac.uk

Or in writing at School of Psychology, University of Birmingham, Edgbaston, Birmingham, B15 2TT.

Understanding Social Abilities and Autism in Fragile X Syndrome

Research Team: Jennifer Glennon and colleagues, Birkbeck Babylab, London.

There is an exciting study taking place at the Birkbeck Babylab, London, to better understand social abilities in children with fragile X syndrome aged between 6 and 10 years. The study involves playing games and puzzles, watching television (eye tracking) and wearing a 'science' (EEG) hat. In total, it takes about 2 hours to complete. It's a very relaxed setting - there's no pressure on children to complete any or all parts of the study - and travel/accommodation expenses associated with your participation will be reimbursed. Also, we test on weekends, as well as week days, so you won't need to miss any school. If you have any questions about the study and/or would like to take part, I would love to hear from you. For more information and/or to take part, please contact Jennifer Glennon by email at jglenn01@mail.bbk.ac.uk.

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