PS01 Pilot UK Psychodermatology Registry (PUK-R)

Abstract

Patient registries provide long-term data on symptomology, disease progression, clinical management, outcomes and treatment safety profiles. There is an increasing number of registries providing real-world evidence on different dermatological conditions, including psoriasis, atopic dermatitis, epidermolysis bullosa and hidradenitis suppurativa. Psychodermatological conditions are underdiagnosed and can be mismanaged due to a lack of understanding of disease course and treatment. However, the reported prevalence is 30–40% in dermatological settings. This suggests that despite their being common, there is limited knowledge on the diagnosis and management of this patient cohort. We aimed to bridge the knowledge gap with regards to the natural history of psychodermatological conditions, to understand patient journeys and to inform guidelines for management by creating a novel observational disease registry. We are proposing a prospective observational disease registry with the goal of defining characteristics, management and outcomes for psychodermatological conditions. This will be titled UK Psychodermatology Registry (PUK-R). We will initially be creating a core dataset, finalized by an eDelphi survey submitted to an approved health informatics team to create a central study database. A pilot registry will then be conducted at a tertiary clinic in the UK, including data collection at baseline and at follow-up. Data will be collected for 12 months. We have been successfully awarded the British Skin Foundation Psychodermatology and Skin Health Alliance’s Research Award to establish the pilot psychodermatology disease registry. We expect that these data will uncover valuable correlations and empower healthcare professionals to make informed decisions. This cohort of patients is unique in their vulnerabilities and needs, which are often unmet due to lack of expertise. PUK-R will be the first step in providing real-world data and meaningful long-term follow-up for people with psychodermatological diagnoses.