NEW UK Autism Research Hub: The Synapse Centre for Neurodevelopment ESNEFT
The Synapse Centre for Neurodevelopment
The Synapse Centre, based within the ESNEFT (East Suffolk and North Essex NHS Foundation Trust) is a new research centre based in the East of England looking to translate biomedical research into practical therapies for local children and their families with neurodevelopmental difficulties.
It will harness the collective skills of a range of professionals including clinicians, speech and language therapists, physiotherapists and clinical psychologists, backed up by a research department with many years of combined experience to deliver research in the NHS.
It will look to innovate and draw on new technologies and partnerships in research
East Suffolk and North Essex NHS Foundation Trust (ESNEFT). ESNEFT is an integrated Acute and Community Trust serving 800,000 residents, including Ipswich and Colchester hospitals and community services in east Suffolk; we are the largest NHS organisation in the East of England.
ESNEFT is also a significant contributor to the work of the National Institute for Health Research (NIHR), which is the nation’s largest funder of health and care research. The NIHR Clinical Research Network (CRN) is comprised of 15 Local Clinical Research Networks and 30 Specialties across England, who coordinate and support the delivery of high-quality research, advancing knowledge and improving care for our patients. ESNEFT is part of the CRN Eastern local network:
“Many children we see have ‘umbrella’ diagnoses of autism or learning impairment that don’t truly reflect the underlying behavioural or biological phenotype.”
THE SYNAPSE CENTRE VISION AND AIMS:
The Synapse Centre aims to establish a ground-breaking database that seeks to combine data from a variety of platforms: social care, education, primary care and secondary care.
Many children we see have ‘umbrella’ diagnoses of autism or learning impairment that don’t truly reflect the underlying behavioural or biological phenotype.
The database will provide a better understanding of numbers of cases, location (to assess level of need and pinpoint specific areas) to enable commissioning of services. It will also provide specific data on individual children that will combine behavioural and biological data to try provide a unique footprint that enables a better understanding of each individual and highlight possible areas of intervention.
Many children with neurodisabling conditions experience a host of medical co-morbidities: gastrointestinal issues, sleep disturbance, seizures and pain. All of these impact on the quality of life of the child and their families, but also their ability to learn and develop.
Better recognition of these co-morbidities and how they can be addressed and treated to improve quality of life and life expectancy, is central to the work of the Synapse Centre.
New areas of research
Neurodevelopment is one of the most exciting specialities to emerge in medicine, and the centre has the potential to provide ground-breaking interventions over the next 20 years.
Recent evidence has demonstrated the existence of a bidirectional communication between the gut microbiota (the normal microorganisms including bacteria that colonise the gut) and the central nervous system (CNS). This cross-talk between the brain and gut may be interrupted when there is dysregulation of the growth of microorganisms in the intestine.
The microbiome has increasingly been shown to have an impact on the developmental programming and architecture of the brain through immune activation, leading to potential consequences on brain maturation that can impact on a variety of cognitive functions.
The Synapse Centre, ESNEFT, seeks to highlight the link between microbial diversity in a variety of neuro-disabling conditions in conjunction with a local microbiome centre in East Anglia.
Gastrointestinal difficulties are very common in this population group and often neglected. This can profoundly impact on behaviour, sleep and general health through poor intestinal absorption of nutrients and vitamins as well as pain.
“The microbiome has increasingly been shown to have an impact on the developmental programming and architecture of the brain through immune activation, leading to potential consequences on brain maturation that can impact on a variety of cognitive functions.”
Increasingly, the role the immune system plays in utero and postnatally in brain development is being understood. Through autoantibody involvement in synaptic pruning and brain architecture and postnatal synaptic modification through microglial activation.
As seen with Covid-19, pathogens including bacteria and viruses have the capacity to influence developmental trajectories and trigger neuropsychiatric symptoms.
Timing of infection or inflammation may have a profound effect on neurodevelopment
Many children with complex needs have difficulties in utilising glucose, especially when under stress through illness or anxiety. Better investigation and understanding of how children respire and utilise energy is a central theme for the centre.
Autonomic dysregulation in many neurodevelopmental conditions leads to the rapid consumption of glucose which can have a big impact on behaviour, physical symptoms and the ability to learn.
During periods of ill health this can also lead to increase risk of hospitalisation and secondary mitochondrial dysfunction that needs to be better supported and understood.
The 100K genome project in many ways has raised more questions than answers. Entering a new age of epigenetics and functional genomics will look at how individual genes are expressed and the impact on biochemical pathways.
The idea of personalised medicine is at the forefront of the ethos of the centre. The variability of phenotype within current individual diagnoses reflects many different biochemical pathways – the emergence of mTOR, RAS and Wnt disturbance. Better understanding the perturbation of these pathways will lead to novel and specific treatments.
There is increasing awareness that scientific advances in other specialities; cancer and diseases of the elderly, may provide better insight into neurodevelopmental diagnoses as many share common intrinsic pathways.
A Pre-school Autism Communication Training (PACT) feasibility study is currently underway at Colchester General Hospital, ESNEFT, to evaluate the practicalities of rolling this form of therapy out and involving all families within the East Suffolk North Essex Foundation Trust. A £5000 charity donation was secured via our own ESNEFT charity enabling 8 families to be recruited. The project started on 23/01/20 and will run for 6 months.
PACT originated through a collaborative project between The University of Manchester, University of Newcastle, Institute of Child Health London, Guys Hospital London, King’s College London, Stockport Primary Care Trust, Lewisham Primary Care Trust, Southwark Primary Care Trust and North Tyneside Primary Care Trust. It was funded by the Medical Research Council, Department of Health and National Institute of Health Research.
The ability to run feasibility projects is also at the heart of the centres work; to bring evidence-based interventions to our local children and families and establish connections with the CCG to commission important service projects.
The work of the Synapse Centre will be supported and augmented by local academic institutions. The critical appraisal and understanding of outcomes of the research undertaken will be integral to the credibility of the site and its ability to translate projects into mainstream therapies.
The Synapse Centre has a core focus group of families and children from a variety of neurodisabling conditions. Their lived experience is vital to better understand and dictate themes of research. Monthly meetings will define research objectives and provide opportunitities for families and young people to be part of research decision making and are integral to the objectives of the centre.
Shining a light onto the journeys of our families, especially during COVID where resources have been stretched, is another important aim. A monthly blog showcasing the achievements and struggles of our children through the ‘Synapse Star’ program will attempt to do this.
Engaging industry / Collaboration
Many new research themes and ideas in progressing understanding of neurodevelopmental conditions can be drawn from other areas of medicine. Cancer genetics, Autoimmune disease, Alzheimer’s and Parkinson’s being only a few of these.
It makes no sense therefore to try and start from the beginning where so many other areas of medicine are more advanced.
Collaboration with other centres will be key, both within the UK and overseas. The Synapse Centre is keen to connect with any institutions that share a similar vision: early intervention and understanding of the behavioural and biological underpinnings of a condition are crucial to long term outcomes.
Since the opening of the Synapse Centre there has been a great deal of interest from clinicians but also from Paediatric Trainees and medical students. To transform and invigorate this area of medicine is reliant on the up and coming generation of doctors
Combining the areas of neurology, psychiatry, immunology, endocrinology and genetics will transform the potential of neurodevelopmental medicine. Monthly external speakers from the UK and abroad, coupled with monthly journal clubs will raise questions, critically appraise research and combine interests and opinions.
In the long term the centre hopes to offer higher degrees to a range of allied health professionals and doctors.
My son Freddie is 6 years old. He has been diagnosed with severe Autism and learning impairment, but he has many comorbidities that impair his development. Not sleeping, suffering with abdominal pain, immune problems and sensory processing difficulties means learning and developing for him is very difficult.
He is the inspiration for this centre and to make medicine realise the importance of early intervention, collaboration and trying to correlate behavioural with biological impairments; to have a more personalised approach to generalised ‘umbrella’ diagnoses.
My experience as a doctor and parent drives this project to better prioritise, fund and research a clinical area that consistently gets pushed to the side.
We welcome collaboration from anyone who shares our vision and transform research in neurodevelopment.
Dr Ben Marlow, Consultant Paediatrician, Clinical Director for The Synapse Centre for Neurodevelopment ESNEFT
To find out more about us and our vision please visit us at synapsecentre.co.uk
Ongoing treatment trials at the Synapse Centre
Please note that the bumetanide trial recruitment window finishes in February and the centre is not accepting any more new patients onto this trial.
For more treatment trials taking place at this and other centres in the UK please visit our listings page for Autism Treatments – UK Clinical Research Trials.
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