Children and young people’s (CYP) mental ill health continues to rise in prevalence; in 2023, approximately 1 in 5 8 to 25-year-olds were living with a probable mental health diagnosis. This increases to 1 in 4 when considering children from deprived areas in the North West of England, which includes boroughs in Greater Manchester (GM).

Less than a third of children with mental health needs actually access and receive care. A key issue is that their information is stored separately across different services – hospitals, schools, GPs, social services, and mental health teams all keep their own records. This makes it difficult to:

• Effectively recruit into critical clinical research
• Spot early warning signs that a young person might need help
• Understand what factors put children at risk
• Develop better ways to prevent mental health problems
• Create more effective treatments

The Children and Adolescents Data REsource (CADRE) addresses research needs in this area through the creation of a linked, pseudonymised and standardised data resource that provides longitudinal, multi-agency data to support children and young people’s health research and improve outcomes. CADRE encompasses patient and public involvement and engagement, rigorous ethical and legal frameworks and processes, and secure technologies to deliver a Secure Data Environment (SDE). CADRE safely combines information from different services to create a more complete picture of children’s health and wellbeing. Through working closely with regional services, all personal details (like names and addresses) are de-identified before the information goes into a regionally specific CADRE technical environment so researchers cannot identify individual children or families. Each person gets a unique research number instead. We aim to include data from:

• NHS services (hospitals, community services, mental health teams)
• Schools and education services
• Social care services
• And in the future, genomics

Access to linked multi-agency data across services for CYP, to carry out critical research and ultimately improve the lives of CYP, is limited in GM. A critical aspect of developing governance to enable multi-agency linkage is to involve members of the public in the development of any governance plans and ensure that a region is being transparent about the use of the data. Initial public engagement and involvement has been carried out locally in Manchester with parents and young people to address public perceptions and opinions on using children’s data for research, with initial enthusiasm for the possibilities of such an initiative in supporting the lives of CYP.

CADRE-GM is in delivery, with key relationships established with Manchester University NHS Trust and Pennine Care NHS Foundation Trust. Additional relationships include Greater Manchester Integrated Care Board, BeeWell and Greater Manchester Mental Health NHS Trust.

CADRE is a deliverable project under the Data Federation Work Package, co-led by Prof Jonathan Green, which is part of the Children and Young People’s Mental Health Theme of the NIHR MH-TRC Mission. For further information see Children and Young People’s Mental Health – NIHR Oxford Health Biomedical Research Centre.

CADRE receives funding from UKRI, NIHR MH-TRC Mission, DATAMIND, Cambridge NIHR BRC, and NIHR East of England Applied Research Collaboration.

For more information, please contract Megan Pritchard (CADRE-GM Research Assistant) megan.pritchard-2@manchester.ac.uk, Roshelle Ramkisson (CADRE-GM Clinical Lead) roshelle.ramkisson2@mft.nhs.uk, or visit: https://cadre.org.uk/

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