The TREAT Registry is a national and international registry of children and adults with moderate-to-severe atopic eczema (AE) aiming to gather data on their photo- and systemic immuno-modulatory therapies (including new and expensive biological therapies).
Atopic eczema (AE) is a common (400 000 patients in the Netherlands) chronic, itchy, inflammatory skin disease that can have a major impact on the quality of life of children and adults and their immediate surroundings.
Serious AE patients are treated by means of photo- or systemic immuno-modulatory therapy. Of these mostly off-label applied therapies, there is insufficient evidence on the short and long term for the effectiveness, safety and cost-effectiveness. Moreover good comparative research and real-life data are lacking. With the arrival of new expensive treatments it is crucial to get insight into these treatments in order to improve quality of care.
By means of a prospective registry these data can be collected and help to obtain information for clinical practica ("spiegelinformatie"), for answering research questions, for reducing costs and implementing the results by guidelines and decision aids.
Through an already established eDelphi study, all stakeholders can provide input into the core data set of the registry. During this project governance, database and IT structure will be developed. Registration will take place at the source.
Among others, the Dutch atopic eczema patient organisation (VMCE), the Dutch dermatology association (NVDV) and pharmaceutical companies support this project.