TREatment of ATopic eczema (TREAT) Registry Taskforce: consensus on how and when to measure the core dataset for atopic eczema treatment research registries

Summary

Background

Comparative, real‐life and long‐term evidence on the effectiveness and safety of photo‐ and systemic therapy in moderate‐to‐severe atopic eczema (AE) is limited. Such data must come from well‐designed prospective patient registries. Standardisation of data collection is needed for direct comparisons and data pooling.

Objectives

To reach consensus on how and when to measure the previously defined domain items of the TREatment of Atopic eczema (TREAT) Registry Taskforce core dataset for research registries for paediatric and adult AE patients.

Methods

Proposals for the measurement instruments were based on the recommendations of the Harmonising Outcome Measures for Eczema (HOME) initiative, the existing AE database of TREATgermany, expert opinions and systematic reviews of the literature. The proposals were discussed at multiple face‐to‐face consensus meetings, one teleconference and via email. The frequency of follow‐up visits was determined by an expert survey.

Results

A total of 16 experts from 7 countries participated in the 'how to measure' consensus process and 12 external experts were consulted. 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.

Conclusions

This core dataset for national AE research registries will aid the comparability and pooling of data across centres and country borders and enable international collaboration to assess the long‐term effectiveness and safety of photo‐ and systemic therapy used in patients with AE.

This article is protected by copyright. All rights reserved.

http://bit.ly/2HTws6u