Conversion disorder (CD) or functional neurological disorder affects at least 764,000 people in the UK per year and leads to long-term distress, disability and diminished quality of life and consequent demand on health care services. As its origin is unknown and treatment has limited effects, this condition forms a high individual and societal burden and clinically-unmet need. Research aiming to improve the outlook for people with this condition is urgently needed. Hence we started the CANDO study that is the first feasibility study in an envisioned series of substudies, to explore the hypothesis that CD and neurocognitive symptoms are related to systemic low-grade inflammation (SLI) and that the cerebellum is involved in the pathogenic mechanism. In the CANDO study we explore the feasibility of recruiting and retaining a cohort of participants with CD and collecting data through psycho-diagnostic testing, clinical lab and neurocognitive testing.
This project addresses the aim to establish a PPI advisory group to guide the CANDO feasibility study and help develop future steps. As we wish to establish a disease-specific PPI panel, we aim to recruit people with relevant ‘experiential knowledge’ (i.e. relevant experience of living with, or caring for someone with, CD). We will also include people who act as advocates or representatives of such people, in addition to health care providers who work with these individuals.