Over the past four years, Cerebra has proudly supported the Cerebra Network for Neurodevelopmental Disorders (CNND), a collaborative initiative spanning four leading universities.

This program has focused on advancing care for children with multiple, complex, or rare conditions (MCRc) by developing innovative tools, evidence-based interventions, and accessible resources. Recognising the significant challenges these children and their families face, we funded the Network to foster impactful research, ensuring children and their carers receive the tailored support they need.

Identifying a critical need: why we funded this research

Children with rare genetic syndromes often experience co-occurring challenges, such as anxiety, sleep difficulties, and behavioural issues, which can severely impact their development and quality of life. Traditional care approaches often fail to account for the complex interplay of these conditions or the unique needs of affected families. By creating a unified, interdisciplinary Network, we aimed to address these gaps through holistic solutions. The program provided an opportunity to drive meaningful change, developing interventions that empower families and improve outcomes for children with neurodevelopmental disorders.

Overview of key research achievements

The CNND, led by experts across four institutions, delivered ground-breaking advancements. The program’s core achievements are outlined below:

Innovative tools and research:

• The flagship BEOND study engaged over 1,000 families, using advanced methodologies like actigraphy and eye-tracking to profile emotional and behavioural outcomes in children with MCRc.
• Co-produced tools, such as the Be Well Checklist and the iKNOW intervention were co-developed to ensure practical relevance and accessibility for families and clinicians.

Intervention pilots and feasibility:

• Piloted parent-led sleep and anxiety interventions showed feasibility and early effectiveness, offering tailored solutions for families.
• Interventions were refined using family feedback, ensuring relevance and practical application.

Capacity building and dissemination:

• The Network trained 148 students across all educational levels, fostering the next generation of neurodevelopmental researchers and clinicians.
• Findings were widely shared through over 221 presentations, public engagement events, and resources like the Be Well Checklist and teacher training modules, reaching stakeholders in 17 countries.
• Resources are readily available through the FIND (Further Inform Neurogenetic Disorders) platform, which currently reaches over 1,000 professionals in the MCRc field.

Significance of the findings: scientific and societal impact

The Network’s work has laid the groundwork for transformative changes in neurodevelopmental care. Its innovative tools have enhanced the identification of key challenges, such as anxiety and sleep disturbances, enabling earlier and more targeted interventions. Resources have directly been tested in clinical practice, and new assessments and interventions tailored for individuals with complex needs have been adopted within NHS Trusts.

On a societal level, the program’s emphasis on co-production ensured that families played a central role in shaping interventions, resulting in tools and resources that resonate with their real-world experiences. This approach has empowered families and professionals alike, highlighting the importance of collaboration and shared expertise in creating impactful solutions.

Looking ahead

The Network has exemplified Cerebra’s commitment to advancing research, addressing the complex needs of children with multiple, complex, or rare conditions (MCRc). By funding this initiative, we have catalysed advancements in neurodevelopmental care, setting a strong foundation for future work.

The program’s outcomes underscore the potential for larger trials to validate its interventions and expand their reach. As the Network transitions into its next phase, its achievements provide a blueprint for sustainable, impactful research that bridges the gap between science and real-world application. Celebrating this progress, we envision a future where innovative, co-produced solutions become standard practice, transforming the lives of children with MCRc and their families.

Read the full report here.