Fig. 4

Identification of research priorities. A Patients/carers and clinicians were asked to rank research topics/areas of interest (namely: pathophysiology, medication trials, outcome measures, diagnosis and classification criteria, mental and emotional well-being) to allow future prioritisation of joint efforts. B Furthermore, open questions were asked, allowing free text responses. C Final themes for roundtable discussions were identified from free-text responses. Notably, research priorities aligned closely with the five topics previously ranked, including ‘Investigations into the underlying causes of CNO (Pathophysiology)’, ‘Medication trials testing drugs’, ‘Defining the ways we diagnose and classify CNO’, ‘Finding outcome measures that help us to treat patients more effectively in clinic, and research studies’, and ‘Studies into how the disease affects your mental and emotional wellbeing’