I am a Paediatric Neurodisability clinical academic with wide ranging research interests in the Neurodisability field, including investigating the neurobiological basis of disabilities, carrying out intervention studies to ameliorate disability, and undertaking research into clinical service delivery.
My clinical work is for two local NHS Trusts. 1. Newcastle Upon Tyne Hospitals NHS Foundation Trust at the Great North Children's Hospital in the Regional Neurodisability service (Regional Feeding clinic, and Neurodevelopmental Disorders Clinic) and 2. Northumberland Tyne and Wear NHS Foundation Trust in the Regional Autism Spectrum Disorder diagnosis, management and intervention service, where I lead multidisciplinary assessments of children with ASD (the Complex Neuroevelopmental Disorders Service).
MB ChB (1996)
MD (Broader Autism Phenotype, 2007)
CCT in Paediatric Neurodisability, and Paediatrics (2007)
National committee roles
Member of the Executive Committee of the British Academy of Childhood Disability (2007-present)
Chair of the British Academy of Childhood Disability Strategic Research Group (2012-present)
Co-Chair of the Research Autism Scientific Advisory Committee (2012-present)
Member, the NIHR Medicines for Children Research Network Neurosciences Clinical Study Group (2013-present)
Trustee, The Castang Foundation (Member of the Castang Foundation Science Committee 2008-2014)
Member of the Research Support Panel for Child Brain Research (2013-present)
Member of the British Autism Study of Infant Siblings (BASIS) Science Committee (2012-present)
Expert adviser to The National Autism Project
Organising Committee member (lead for exhibition and sponsorship) and Scientific Committee member, The 25th European Academy of Childhood Disability (EACD) meeting, Newcastle-Gateshead, The Sage, Ocober 2013
Nov 2006 – May 2009 Consultant and Honorary Senior Lecturer, Paediatric Neurodisability, Great Ormond Street Hospital and the Institute of Child Health, London
Sept 2008 – May 2009 Senior Academic Research Fellow and Honorary Consultant Paediatrician University of Oxford and Oxford Children’s Hospital
I lead the Autism Spectrum Database-UK, which is a database of families of children with ASD, who have shown interest in participating in research. The database has two main aims: 1. To increase families access to research; and 2. To increase the number of families available to be recruited to researchers studies, resulting in improved research capacity. ASD-UK was funded by the UK autism charity Autistica in 2010 (£145 000), and the integration with the regional Nort East database has been funded from 2014-17 (£225 000). More than 1500 families have joined ASD-UK, and we are now in touch with over 2200 families. Information for families and researchers can be found at http://www.asd-uk.com/. Between the two databases, more than 3000 families can be contacted about research.
ASD Lifecourse, Adulthood and Ageing
I lead a programme of research about Autism Spectrum Conditions in adulthood and older age that started to recruit adults and relatives to research cohorts in February 2015. This first part of the research programme is funded by Autistica (£200 000). Additional projects will commence in 2015. The first of these is around adult diagnosis and post diagnosis services (£170 000 from Autistica, and £30 000 from Northumberlnd Tyne and Wear NHS Foundation Trust). See https://research.ncl.ac.uk/adultautismspectrum/ for more information.
The Drooling Reduction Intervention Trial (DRI): I am Chief Investigator for a 15 site multicentre trial of the effectiveness of Glycopyrronium vs Hyoscine to treat drooling in children with neurodisability. Funding is from Wellchild (£57 000), the Castang Foundation (£60 000), The Children's Foundation (£21 000), and the British Academy of Childhood Disability (£25 000). We are almost halfway through recruitment, and the trial will end in March 2015
Virtual Reality Treatment for children with ASD and specific phobia: This is a collaboration with the SME Third Eye. The initial project was funded through a Newcastle University sponsored Daphne Jackson Fellowship to Dr Morag Maskey (£42 000). The results of the study have been published and can be found here: http://www.ncl.ac.uk/ion/news/news/item/children-with-autism-overcome-real-life-fears-in-virtual-world-copy
In February 2015, we started an NIHR Research For Patient Benefit funded project to investigate the treatment of children with ASD and phobia through two local NHS Trusts (£246 000)
The Dolphin Nutritional Intervention Trials: Together with Co PI Dr Peter Sullivan, I lead the Oxford Dolphin research studies. Follow up of the 100 children in the trial ended in February 2015.
The follow up study of children in early childhood has recently started (£150 000 from the Castang Foundation)
Since 2011, I have led the International Molecular Genetic Study of Autism Consortium (IMGSAC). Data and family DNA are now housed in Newcastle. I lead IMGSACs role in the Autism Genome Project Consortium, a consortium of researchers from Europe and North America. The AGP aims to identify genetic casues of autism spectrum disorder, the relationship between genotype and ASD phenotype, and the clinical application of these findings. Together with colleagues, I have led the investigation of the Broader Autism Phenotype in relatives of people with autism from the IMGSAC families
I work with a number of collaborators nationally and internationally on ASD genetic studies (including on the UK10K project)
Other research I lead
The ASD+ study. This study has investigated the co existing conditions of children with ASD, and their impact on the family (through an Autistica Indian Fellowship, supporting Dr Beena Koshy; £88 000). Dr Koshy's study has collected data from more than 650 parents of children with autism spectrum disorder. Qualitative interviews and professionals will start in 2015.
As Co Investigator
I am part of a Newcastle led, multisite Research Programme regarding 'Transition'. This is a £2 million NIHR Programme grant for Applied Research, and is led by Professor Allan Colver (2012-2017). The Programme aims to answer the question: How can health services contribute most effectively to facilitating successful transition of young people with complex health needs from childhood to adulthood?
I am a member of the MeASURe group who have just completed a systematic review of measurement tools used to measure progress and outcome in young children in ASD (MeASURe: Measurement in Autism Spectrum Disorder Under Review). NIHR HTA, £271 000 (Chief Investigator Professor Helen McConachie, Newcastle University)
I am part of the Preschool Autism Communication Trial 7-11 follow up study (PACT 7-11) of children recruited to the MRC funded PACT study. This MRC funded follow up study ended in early 2015 (£740 000, Chief Investigator Professor Jonathan Green, University of Manchester)
Dr Jacqui Rodgers leads a project to create a standardised measure of anxiety in children with ASD. Measuring anxiety in Autism Spectrum Disorder (£47 000, Baily Thomas Foundation)