Over the next three and a half years, Cerebra will support the next phase of this vital work. Led by experts Dr Jane Waite (Aston University), Prof Caroline Richards (University of Birmingham), Dr Jo Moss (University of Surrey), and Dr Hayley Crawford (University of Warwick), the Cerebra Network is a pioneering collaborative initiative, focusing on advancing care for children with multiple, complex, or rare conditions (MCRc) through its high-quality research.

Why This Research is Crucial: Addressing Unmet Needs

Children with MCRc face significant health and wellbeing inequalities compared to their neurotypical peers. They are highly likely to have difficult experiences, including behaviours that challenge (such as aggression and self-injury), poor mental health and wellbeing (such as anxiety), poor sleep, and difficulties getting timely identification of co-occurring conditions (like autism).

Crucially, despite this heightened clinical need, children with MCRc often experience the poorest service provision. This is largely because there is not enough research evidence to show what assessments, support and interventions work well for these children and their families. Recognising the significant challenges these children and their families face, Cerebra funded and continues to support the Network to carry out impactful research, ensuring children and their carers receive the tailored support they need.

Driving Progress through Research

The core mission of the Network is to conduct high-quality research that leads to real-world change, improving the lives of children with MCRc and their families.

This aim is pursued through four key objectives:

1. Improve identification of conditions by developing better assessment tools to help recognise issues like mental health problems or autism characteristics earlier and more accurately in children with MCRc.
2. Develop knowledge and understanding of the mechanisms (biological, cognitive, and psychological) that cause and drive poorer outcomes. Understanding the root causes of these challenges, will allow the development of support that is more effective and personalised, moving beyond just managing symptoms.
3. Develop and test new and targeted interventions derived from better identification and accurate causal models to improve mental health, sleep, and behaviour for children with MCRc.
4. Generate significant real-world impact by translating knowledge into practice, creating accessible digital resources, and training the next generation of researchers and practitioners to secure long-term support for families.

The Research Plan

The Cerebra Network focuses its research on four interconnected areas, addressing key areas of need for children with MCRc and their families.

1. Autism in children with MCRc

Autism characteristics are very common in children with MCRc. However, identification and diagnosis of autism in clinical practice is often significantly reduced and delayed. A key barrier is “diagnostic overshadowing“, where a child’s known genetic syndrome or learning disability can cause clinicians to overlook signs of co-occurring autism.

The project will explore clinicians’ experiences with the autism assessment process to identify ways it can be improved. It will also examine the social and behavioural profile of children with and without an autism diagnosis to better understand the key similarities and differences that can help guide more accurate assessments.

2. Sleep

Children with MCRc are much more likely to experience sleep problems, which negatively impact daytime functioning, including behaviour, cognition, and mood. However, generic behavioural sleep interventions are often poorly suited to the unique sleep patterns and the complex behavioural and health needs associated with MCRc.

Researchers will collaborate with parents and carers to co-develop new, syndrome-sensitive behavioural sleep interventions tailored to the specific needs of children with MCRc. They will use objective, wearable sleep trackers and sensitive play-based assessments to rigorously test whether improvements in sleep lead to better daytime outcomes for children with MCRc and their families.

3. Behaviour

Behaviours that challenge, such as self-injury or aggressive behaviours, are common in children with MCRc. The first step to providing better support is understanding the cause of the behaviour (things like pain, anxiety, or sleep problems), which can often be overlooked. Too often, support focuses only on the behaviour itself, not the underlying reason. To address this, the Network worked with parent/carers and clinicians to co-produce The Behaviour Checklist, a clinical tool that empowers parents and carers to ensure common causes of these behaviours are routinely considered, facilitating a shared understanding with clinicians.

The project will focus on the further development of The Behaviour Checklist, by inviting families and clinicians to use it to assess its effectiveness in improving children’s behaviour and family wellbeing. It will aim to understand existing service provision and determine whether using the checklist leads to better outcomes. Ultimately, the project seeks to establish whether this simple tool can improve assessment and management of behaviours that challenge, providing earlier and more effective support thus contributing to the family’s overall wellbeing.

4. Mental Health and Anxiety

Many children with MCRc experience significant anxiety that has a large impact on their quality of life and often worsens over time if families are not supported appropriately. While it is possible to intervene to reduce anxiety at every age and stage of a child’s life, a critical “early intervention window” is often missed, making later intervention more difficult once anxiety-related behaviours become entrenched.

Researchers will work with families and clinicians to develop an intervention that supports families of young children. The goal is to help them understand and reduce the impact of risk factors for long-term anxiety before those patterns become deeply established.

Looking Ahead: Why Cerebra Funded This Project

The Cerebra Network has exemplified Cerebra’s commitment to advancing research, addressing the complex needs of children with multiple, complex, or rare conditions (MCRc). Cerebra’s continued support will enable the development and widespread adoption of innovative, co-produced solutions, transforming the lives of children with MCRc and their families.

Through this continued funding, the Cerebra Network expects to achieve several outcomes that will significantly benefit families, clinicians, and the broader academic community:

• Improved Diagnosis and Assessment: The research will improve understanding of assessment and diagnosis of autism in children with MCRc.
• New Interventions: The Network will develop new, tailored sleep interventions and produce the first bespoke early intervention package designed to reduce anxiety in MCRc.
• Better Support for Behaviour: Findings will inform how The Behaviour Checklist can be used effectively in clinical practice to improve assessment and support for behaviour.
• Building Future Capacity: The training programme will support over 25 new undergraduate and postgraduate students and clinical trainees in MCRc, helping to build the specialised workforce necessary to improve long-term outcomes for children.
• Dissemination and Accessibility: The Network will ensure that accessible resources continue to be made available to parents, carers, clinicians, and educators, through platforms such as FIND (findresources.co.uk) and TTR (www.findteacherresources.co.uk), ensuring that research findings translate into practical, real-world change.

This work promises to create lasting change by advancing assessments, deepening understanding of underlying causes, testing effective interventions, and empowering communities with free, accessible digital tools for years to come.