As a first step on our journey, we conducted an international eDelphi exercise and a consensus meeting among 410 dermatologists, nurses, non-clinical researchers involved in AE, pharmaceutical industry representatives, regulatory body representatives and patients from 36 countries, including members of the International Eczema Council (IEC), the European Taskforce for Atopic Dermatitis (ETFAD), and the International Society for Atopic Dermatitis (ISAD). The study identified a final core set containing 19 domains with 69 domain items to be captured by national AE systemic therapy registries (Gerbens et al., 2017; Gerbens et al., 2018).

Core set of domains and domain items

Minutes TREAT eDelphi Consensus Meeting Amsterdam 25th october 2016

Further work has been performed to define how these 68 domains and domain items should be measured. Three round table consensus meetings have taken place in London (27th March 2017), Amsterdam (15th May 2017) and Nantes (12th June 2017). A consensus was reached for all domain items on how they should be measured by assigning measurement instruments. A minimum follow-up frequency of initially 4 weeks after commencing treatment, then every 3 months while on treatment and every 6 months while off treatment was defined (Vermeulen et al., 2019).

This short web-based survey aimed to provide insight into current prescribing practices of photo- and systemic immunomodulatory therapies in Europe for adults with moderate-to-severe AE and the factors influencing these prescribing practices (Vermeulen et al., 2020). The survey complements our previous European and North American surveys (Proudfoot et al., 2013; Taylor et al., 2016; Totri et al., 2017).

See Spuls et al., 2017. Several national registries are currently ongoing or in the development phase. The best-practice guidelines of the European Commission funded PAtient REgistries iNiTiative joint action (PARENT JA) is taken into account (Zaletel and Kralj, 2015).

Eligible patients are children and adults diagnosed with AE who are starting on photo- or systemic immuno-modulatory therapy (conventional immunomodulatory therapies as well as new biologics and small molecules), taking into account the national and local eligibility criteria for these specific therapies. Patients will be followed independently of stopping therapy or subsequent switch to other therapies.

The protocol of the registry has been published, see Bosma et al., 2019.

Past years we have run an international COVID-19, secure, online, de-identified Personal Health Identifier (PHI)-free reporting registry: the Surveillance Epidemiology of Coronavirus Under Research Exclusion (SECURE)-AD registry (Musters et al., 2023). COVID-19 outcomes in AE patients treated with and without systemic immunomodulating medication were gathered, to answer questions regarding how COVID-19 might impact patients with AE who are treated with systemic immunomodulating medication.

The SECURE-AD registry was supported by the International Society for Atopic Dermatitis (ISAD), the International League of Dermatological Societies (ILDS), the European Task Force on Atopic Dermatitis (ETFAD), the European Dermato-Epidemiology Network (EDEN), the European Dermatology Forum (EDF) and the Skin Inflammation and Psoriasis International Network (SPIN).