Our Studies

The research group undertake studies around clinical service development, the effectiveness and acceptability of interventions and treatments, understanding development and disability, and how people’s lives change through the lifecourse. One key aspect of our studies is they aim in some way to improve the lives of people affected by neurodevelopmental conditions and their relatives. For a full list of studies we undertake, please see below.

Adult Autism Spectrum Cohort – UK

The Adult Autism Spectrum Cohort – UK (ASC-UK) is a study for adults on the autism spectrum, and relatives of adults. ASC-UK aims to learn much more about the life experiences of both adults on the autism spectrum, and relatives  and how lives change with time.

‌‌‌Autism Spectrum Database - UK‌‌

The Autism Spectrum Database - UK (ASD-UK) is the UK research database including families with children on the autism spectrum. ASD-UK gives families the opportunity to take part in research that aims to answer important questions about autism.

Communication Development and Cerebral Palsy‌

This study is following the communication development of children who have motor disorders. It will show if it is possible to predict which children will have communication difficulties when they reach school age and how severe those difficulties will be.


Coping with Uncertainty and ASD

Addressing intolerance of uncertainty in children with autism spectrum disorder:  An intervention feasibility trial   ‌


Daslne is the Database of Children with Autism Spectrum Disorder Living in the North East. Its aim is to provide accurate information about children with Autism Spectrum Disorder (ASD) living in North East England.

‌‌‌E-SALT   ‌

We are developing a mobile phone app to use in speech therapy with parents of children who have motor difficulties.

Early Therapy in Perinatal Stroke

eTIPS stands for “Early Therapy in Perinatal Stroke”. With input from therapists and from parents of children who have had a perinatal stroke, we have designed a manual, website and videos to support parents of infants with perinatal stroke.

FEEDS Review‌   ‌

The FEEDS review (Focus on Early Eating Drinking and Swallowing review) aims to find about the services currently offered to families of children with eating, drinking and swallowing difficulties by NHS services. The study aims to gather information in order to plan a future study of one or more potentially worthwhile treatments.


FIDELITY is investigating if it is possible to provide therapy to improve the speech intelligibility of children with cerebral palsy via the internet using Skype.


This is a project looking at outcomes after Acquired Brain Injury (ABI) outside infancy and early childhood, and how these might be improved, through a better understanding of rehabilitation and its broader effects on the child, family and supporting services.

Identifying Targets to Prevent Suicide in Autism: A Psychological Autopsy Study

This project aims to establish the true rate of autism in UK suicides, and understand whether autistic individuals experience unique risk factors for suicide compared to the general population. Results will be used to co-design a suicide prevention strategy in partnership with a steering group of autistic people who have attempted suicide.

Improving the Health of Older Autistic People

The study aims to understand the specific physical health needs of older autistic people, assess to what extent these needs are currently being met, and the services that are currently being provided. The study then aims to develop an intervention that will improve access to the healthcare older autistic people need.

Managing Anxiety in Williams Syndrome

This project focuses on the development of an intervention package to address anxiety experienced by children with Williams Syndrome. A parent mediated group intervention is under development (Billy’s Feelings Toolbox©).

Managing Repetitive Behaviours

Managing Repetitive Behaviours (MRB) is a clinical and cost effectiveness trial of a parent group intervention to manage restricted and repetitive behaviours in young children with Autism Spectrum Disorder.

Methods of Diagnosis for ASC in Adults

The study will examine current methods of diagnosing autism spectrum conditions in adults and review the evidence for the measures. In addition, a new diagnostic interview for ASC in adults will be developed and piloted.

‌‌‌‌‌‌‌‌‌PACT-G   ‌

‌‌‌‌‌‌The Paediatric Autism Communication Trial - Generalised (PACT-G) aims to test the efficacy of social communication intervention to improve the communication skills and reduce autism symptoms in young children with autism spectrum disorder.  The therapy is delivered by parents and learning support assistants, with training from speech and language therapists.


In this study, we will conduct a national autism and anxiety survey, gathering the views of autistic people and professionals. Using this information, we will adapt current NHS anxiety treatments to make them ‘fit for purpose’ for use with autistic adults and test their efficacy in a randomised control trial.

‌‌‌‌‌‌‌‌‌The Transition Programme

Transition is a 5-year Programme of research looking at how health services can contribute most effectively to the successful transition of young people with complex health needs from childhood to adulthood.

Uncertain Futures‌‌

‌‌‌Uncertain Futures is a one year study which will explore concerns relating to uncertainty about the futur‌es for adults with a diagnosis of Autism Spectrum Disorder (ASD) and their families. The study is funded by Research Autism.

Understanding Frames‌

The purpose of this study is to understand the current use of standing frames in children with cerebral palsy in the UK, and to consider how we may design a research trial or trials to develop clinical evidence for standing frame use.

UK National Autism Diagnostic Services Survey 2020

The UK National Autism Diagnostic Services Survey 2020 aims to identify existing models of diagnostic assessment and gain an understanding of associated barriers and facilitators to service delivery. The survey is part of a wider research programme led by colleagues at Sussex Community NHS Foundation Trust. Parents and parent organisations are involved as part of the research team.

‌‌‌‌‌‌‌‌‌Recently Completed Studies‌ ‌‌

Further information and results from studies that have been completed recently.

Resetting Services to Disabled Children 

This research study aims to find out what impact the changes in services have had on children’s health and wellbeing. We want to find out which changes worked well, which changes were not supportive for families and disabled children, and why. We are working with families and professionals from the NHS, social care and education to show how services could be delivered better to provide high quality care to disabled children as the NHS is remodeled. We also want to define minimum acceptable, effective core health service provision for future emergencies and lockdowns.