are members of the executive committee of the HOME initiative. All other authors, except Jasvinder Singh, are members of the HOME initiative. Jasvinder Singh is a member of the executive of OMERACT, an organization that develops outcome measures in rheumatology and receives arms-length funding from 36 companies. The authors state there are no other conflicts of interest for this study.

Summary This article is a report of the fourth meeting of the Harmonising Outcome Measures for Eczema (HOME) initiative held in Malmö, Sweden on 23–24 April 2015 (HOME IV). The aim of the meeting was to achieve consensus over the preferred outcome instruments for measuring patient‐reported symptoms and quality of life for the HOME core outcome set for atopic eczema (AE). Following presentations, which included data from systematic reviews, consensus discussions were held in a mixture of whole group and small group discussions. Small groups were allocated a priori to ensure representation of different stakeholders and countries. Decisions were voted on using electronic keypads. For the patient‐reported symptoms, the group agreed by vote that itch, sleep loss, dryness, redness/inflamed skin and irritated skin were all considered essential aspects of AE symptoms. Many instruments for capturing patient‐reported symptoms were discussed [including the Patient‐Oriented SCOring Atopic Dermatitis index, Patient‐Oriented Eczema Measure (POEM), Self‐Administered Eczema Area and Severity Index, Itch Severity Scale, Atopic Dermatitis Quickscore and the Nottingham Eczema Severity Score] and, by consensus, POEM was selected as the preferred instrument to measure patient‐reported symptoms. Further work is needed to determine the reliability and measurement error of POEM. Further work is also required to establish the importance of pain/soreness and the importance of collecting information regarding the intensity of symptoms in addition to their frequency. Much of the discussion on quality of life concerned the Dermatology Life Quality Index and Quality of Life Index for Atopic Dermatitis; however, consensus on a preferred instrument for measuring this domain could not be reached. In summary, POEM is recommended as the HOME core outcome instrument for measuring AE symptoms.

Background: Evidence on long-term dupilumab treatment for atopic dermatitis in daily practice is lacking.Objective: To investigate patient characteristics, treatment aspects, effectiveness, and safety of up to 84 weeks of dupilumab treatment.Methods: An observational prospective cohort study was conducted of patients with atopic dermatitis starting dupilumab in routine clinical care.Results: Of the 221 included patients, 103 used systemic therapy at baseline. At 84 weeks, we found a change of À15.2 (SE, 1.7) for the Eczema Area and Severity Index, À16.9 (SE, 1.4) for the Patient-Oriented Eczema Measure, and À17.2 (SE, 1.6) for the Dermatology Life Quality Index. We found a trend for improvement over time for the Investigator Global Assessment and Numerical Rating Scale for pruritus. Severe (n = 79) including serious (n = 11) adverse events were observed in 69 patients. Eye complaints were most frequently reported (n = 46). Twenty-one patients adjusted the regular dosing schedule, and 14 patients discontinued treatment, mainly due to ineffectiveness (n = 7).Limitations: Only adverse events of severe and serious nature were registered for feasibility reasons. Conclusion:Daily practice dupilumab treatment of up to 84 weeks is generally well-tolerated, apart from the reporting of eye complaints. It can be considered a long-term effective treatment for atopic dermatitis in combination with topical and initial concomitant systemic treatment, showing a sustained improvement of signs, symptoms, and quality of life.

BackgroundPatients with moderate-to-severe atopic eczema (AE) often require photo- or systemic immunomodulatory therapies to induce disease remission and maintain long-term control. The current evidence to guide clinical management is small, despite the frequent and often off-label use of these treatments. Registries of patients on photo- and systemic immunomodulatory therapies could fill this gap, and the collection of a core set concerning these therapies in AE will allow direct comparisons across registries as well as data sharing and pooling.Using an eDelphi approach, the international TREatment of ATopic eczema (TREAT) Registry Taskforce aims to seek consensus between key stakeholders internationally on a core set of domains and domain items for AE patient registries with a research focus that collect data of children and adults on photo- and systemic immunomodulatory therapies.Methods/designParticipants from six stakeholder groups will be invited: doctors, nurses, non-clinical researchers, patients, as well as industry and regulatory body representatives. The eDelphi will comprise three sequential online rounds, requesting participants to rate the importance of each proposed domain and domain items. Participants will be able to add domains and domain items to the proposed list in round 1. A final consensus meeting will be held with representatives of each stakeholder group.DiscussionIdentifying a uniform core set of domains and domain items to be captured by AE patient registries will increase the utility of individual registries, and provide greater insight into the effectiveness, safety and cost-effectiveness of photo- and systemic immunomodulatory therapies to guide clinical management across dermatology centres and country borders.Trial registrationNot applicable. This eDelphi study was registered in the Core Outcome Measures for Effectiveness Trials (COMET) database.Electronic supplementary materialThe online version of this article (doi:10.1186/s13063-016-1765-7) contains supplementary material, which is available to authorized users.

Background: Measuring patient-centered outcomes in clinical practice is valuable for monitoring patients and advancing real-world research. A new initiative from the Harmonising Outcome Measures for Eczema (HOME) group aims to recommend what might be recorded for atopic eczema (AE) patients in routine clinical care. Objectives: Prioritize outcome domains to measure AE in clinical practice and select valid and practical outcome measurement instruments for the highest-priority domain. Methods: An online survey of HOME members identified and ranked 21 possible health-domains. Suitable instruments were then selected for the top-prioritized domain at the HOME VI meeting, using established consensus processes informed by systematic reviews of instrument quality. Results: Patient-reported symptoms was the top-prioritized domain. Based on psychometric properties and feasibility, there was consensus that the recommended instruments to measure AE symptoms in clinical practice are the Patient-Oriented Eczema Measure (POEM) and/or the Patient-Oriented SCORing Atopic Dermatitis index (PO-SCORAD). The Numerical Rating Scale for itch received support pending definition and validation in AE.

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and T.B. were involved in development of the RECAP instrument. A.G., L.E. and E.S. were involved in development of the ADCT instrument. A.G. and L.E. were involved in development of the peak NRS-11 itch instrument. M.B. was our independent chair and had no conflicts of interest.