The Society is currently working with the following research teams in the UK and we should be pleased to hear from families who are interested in taking part in these studies.
Novartis Pharmaceuticals recruiting for two AFQ056 Clinical Trials
Novartis is recruiting for two phase IIb clinical trials of the drug AFQ056, which are to be carried out in Edinburgh, Scotland.
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One trial is open to adolescent patients (male and female) with fragile X syndrome aged 12 years to 17 years; and
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One is open to adult patients (male and female) with fragile X syndrome aged 18 years to 45 years.
Both clinical trials are randomized, double-blind, placebo-controlled, parallel group studies to assess whether AFQ056 is a safe and effective treatment for fragile X syndrome.
Participants from all over the UK are welcome to take part in the trial but will be required to visit the study clinic in Edinburgh nine times during the five month trial period. Travel and accommodation costs will be paid by Novartis. If you are interested in participating in one of these trials or have any questions relating to the trials please contact:
Dr Andrew Stanfield, Clinical Senior Research Fellow and Honorary Consultant in Psychiatry,
University of Edinburgh,Kennedy Tower,Royal Edinburgh Hospital,EH10 5HF
Tel: 0131 537 6265
andrew.stanfield@ed.ac.uk
Research to study Male carriers of Fragile X
This study is being led by Sebastien Jacquemont at the University Hospital of Lausanne in Switzerland.
Dr Sebastien Jacquemont has been studying Fragile X Tremor Ataxia Syndrome (FXTAS) for many years. This study involves an overnight stay in Switzerland, a blood test, some neurological assessments and a MRI brain scan. This is a very important study which hopefully will extend the knowledge of FXTAS.
Educational Provision and family support needs for children with Fragile X Syndrome
Colin Reilly, educational psychologist
This is a survey based study investigating the educational and family support needs of children with fragile X syndrome. Colin is hoping all families with school aged affected children will fill in a comprehensive paper survey and also give a similar survey to their child’s school for their teacher to complete. This survey should produce some interesting results which may be useful to families and teachers in the future.
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If you would like to volunteer to take part in studies that the Fragile X Society is supporting please contact Sally Hicks, Research Officer, by telephoning 01371 875100 or email info@fragilex.org.uk or go to Contact Us
See also
UK Research Reports
Society's Research Policy
The Society is currently working with the following research teams in the UK and we should be pleased to hear from families who are interested in taking part in these studies.
Novartis Pharmaceuticals recruiting for two AFQ056 Clinical Trials
Novartis is recruiting for two phase IIb clinical trials of the drug AFQ056, which are to be carried out in Edinburgh, Scotland.
-
One trial is open to adolescent patients (male and female) with fragile X syndrome aged 12 years to 17 years; and
-
One is open to adult patients (male and female) with fragile X syndrome aged 18 years to 45 years.
Both clinical trials are randomized, double-blind, placebo-controlled, parallel group studies to assess whether AFQ056 is a safe and effective treatment for fragile X syndrome.
Participants from all over the UK are welcome to take part in the trial but will be required to visit the study clinic in Edinburgh nine times during the five month trial period. Travel and accommodation costs will be paid by Novartis. If you are interested in participating in one of these trials or have any questions relating to the trials please contact:
Dr Andrew Stanfield, Clinical Senior Research Fellow and Honorary Consultant in Psychiatry,
University of Edinburgh,Kennedy Tower,Royal Edinburgh Hospital,EH10 5HF
Tel: 0131 537 6265
andrew.stanfield@ed.ac.uk
Research to study Male carriers of Fragile X
This study is being led by Sebastien Jacquemont at the University Hospital of Lausanne in Switzerland.
Dr Sebastien Jacquemont has been studying Fragile X Tremor Ataxia Syndrome (FXTAS) for many years. This study involves an overnight stay in Switzerland, a blood test, some neurological assessments and a MRI brain scan. This is a very important study which hopefully will extend the knowledge of FXTAS.
Educational Provision and family support needs for children with Fragile X Syndrome
Colin Reilly, educational psychologist
This is a survey based study investigating the educational and family support needs of children with fragile X syndrome. Colin is hoping all families with school aged affected children will fill in a comprehensive paper survey and also give a similar survey to their child’s school for their teacher to complete. This survey should produce some interesting results which may be useful to families and teachers in the future.
------------------------------------------------------------------------------------------------------------
If you would like to volunteer to take part in studies that the Fragile X Society is supporting please contact Sally Hicks, Research Officer, by telephoning 01371 875100 or email info@fragilex.org.uk or go to Contact Us
See also
UK Research Reports
Society's Research Policy