This study aims to develop a toolbox of resources to help people working in GP practices to become more involved in the care of young people with life-limiting conditions, particularly at the point when young people leave a children’s hospice and move into adult services (transition). This will improve the quality of care received by young people and their families. We want to work in partnership with young people and their families so that the design of the toolbox is shaped by their needs.

EACH involvement: Participant Identification Centre (PIC), from November 2025. We will be approaching family members/carers and children who have transitioned to adult care in the last five years or are due to transition. To give consent to be contacted by the study team, or if you are interested in hearing more, please contact our Lead Research Nurse.

The Dystonia IMPACT study aims to understand what is important to children with childhood-onset movement disorders/dystonia.

EACH involvement: Participant Identification Centre (PIC), October 2025-June 2026. We will be approaching potentially eligible families with information about the study and consent to be contacted by the study team. If you would like to find out more please contact our Lead Research Nurse or sign up here.

This study looks at the experiences of children and young people in the UK with a disability and mobility difficulties. Researchers will talk to children, young people and their family members to understand their experiences of mobility difficulties, as well as existing services and support. 

EACH involvement: Advertising within the service, from September 2025. Information about the study will be displayed at relevant events. If you are interested in finding out more, please contact our Lead Research Nurse.