A bird’s-eye view on eczema: Harmonising outcomes and datasets for atopic eczema

Atopic eczema (AE) is a chronic inflammatory skin disease and in the top 50 of most prevalent diseases. There is no cure yet, but there are treatments that reduce disease activity. More knowledge about the use, monitoring and long-term effects of photo- and systemic treatments is needed. Patient registries may aid in collecting long-term effects, but they need to be developed and their data collection harmonised. Above all, to draw meaningful conclusions from research about treatments, the outcomes and outcome measurement instruments used to measure effects need to be valid, reliable and standardized.
This thesis concerns the harmonisation of symptom outcome measurement instruments for AE clinical trials (part I), the evaluation of long-term effects of the off-label treatments methotrexate (MTX) and azathioprine (AZA) in AE (part II), and the development of a core dataset for national AE research registries collecting data on photo- and systemic therapies together with the establishment of a registry platform (part III).
Part I demonstrated that there is a heterogeneity in symptom instruments used in trials. Two systematic reviews were conducted and used to inform a consensus meeting in order to choose one symptom instrument for trials, i.e. the Patient-Oriented Eczema Measure (POEM).
Part II showed that MTX and AZA seem to be effective and safe as maintenance treatments in moderate-to-severe AE up to 5 years.
In part III a core dataset for AE registries was established by an eDelphi exercise and consensus meeting, to make meta-analyses across registries and between countries possible.