Current Research

1. Infantile Spasms: ICISS Research Project (Randomised Controlled Trial and Infantile spasms (West Syndrome)

(Royal United Hospital Bath) Professor John Osborne (now retired but still maintaining an active role in the trial): new chief investigator, Dr Finbar O’Callaghan: Infantile spasms which comprise a severe seizure disorder have a high morbidity and are difficult to treat. This study aims to compare the effects of Vigabactrin with those of prednisolone and tetracosactide in the treatment of spasms. In September 2012 over 250 patients had been recruited into the trial, which makes it over twice the size of any previous study in this area. The target is to recruit 420 patients by the Spring of 2014. Two significant articles have been published in 2012: O’Callaghan FJK, Lux AL, Darke K, Edwards SW, Hancock E,Johnson,AL, Kennedy CR,Newton RW, Verity CM,Osborne JP. ‘The effect of lead-time to treatment and age of onset on developmental outcomes in infantile spasms: evidence from the United Kingdom Infantile Spasms Study (UKISS’, Epilepsia 52(7)@ 1359-64; Osborne, JP, Lux AL, Edwards SW, Hancock E, Johnson AL, Kennedy CR, Newton RW, Verity CM, O’Callaghan FJK. ‘The underlying etiology of infantile spasms (West Syndrome): Information from the United Kingdom Infantile Spasms Study (UKISS) on contemporary causes and their classification’. Epilepsia 51(10): 2168-74. A further paper looking at movement disorder and MRI changes in infantile spasms based on ICSS data has been submitted for publication.

 

2. Optimising Nutrition to improve growth and reduce Neurodisabilities in neonates at risk of neurological impairment:

Dr Peter Sullivan, Reader in Paediatric Gastroenterology, Head of Department of Paediatrics, University of Oxford, John Radcliffe Hospital, Oxford. Early identification of brain damage in children who are likely to be at risk of malnutrition will allow early nutritional assessment and appropriate intervention. The hypothesis behind this study is that early nutritional intervention which includes adequate amounts of ‘neurotrophic ‘ precursors will improve growth and ameliorate the effects of perinatal brain injury. Recruitment on this study has been very successful throughout 2012 and has remained ahead of projected numbers throughout the year. A total of 62 had been recruited by the end of2012. 11 children have now completed 2 years on the study. 71 MRIs have been completed to date. One-year assessments are now complete for 28 of the cohort. 11 two-year (final) assessments have also now been done. An additional 2 year grant for follow-up studies has been agreed.

 

3. Trial of Effectiveness of glycopyrronium vs Hyoscine for treatment of excessive salivation in children with neurodisability:

Institute of Health and Society, Sir James Spence Building, Royal Victoria Infirmary, Newcastle-upon Tyne, NE1 4LP: Application from Professor Alan Colver: chief research worker Dr Jeremy Parr, Clinical Senior Lecturer and Consultant Paediatric Neurologist: An award has recently been made to part-fund this study. Many children with neurodisabilities (particularly cerebral palsy) drool or dribble saliva due to poor oral-motor control. This may lead to facial skin becoming sore, frequent changes of clothing and damage to educational equipment. It may also lead to social embarrassment for both child and family. The aim of the study is to identify whether hyoscine or glycopyrronium is more effective; identify at what tolerable dose the greatest effect is seen: identify adverse effects of medication and how these relate to dosage. This information will be used to help develop evidence based guidance to help children, parents and doctors to decide which medication to prescribe and at what dose in order to reduce problematic drooling; and also to show how adverse effects can be monitored and when dosage should be reduced or medication stopped.

 

4. Sequencing of candidate genes related to sex steroids and neural growth in autism and Asperger syndrome:

A request for funding was received from the Autism Research Trust (ART). A small grant was awarded to enable the group to study one of the five candidate genes. The ultimate aim of this project is to find a gene that is directly associated with autistic spectrum disorders. The likely outcome of such a study on its own would be to provide the pilot evidence that will subsequently provide the case for the Medical Research Council to fund a larger scale project investigating this area.

 

5. Research being undertaken at Manchester University by Professor Munro:

Listening effort in young adults and children with normal hearing and hearing loss. The funding is being used to fund a PhD student.

 



Info

Registered Charity No. 1003867

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Ian Burman
Michael Glynn
Ian Crocker
Paul Eunson
Jeremy Parr
Carol Barfoot

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