HEAD Registry
A pan-European registry to monitor
the impact of allergic diseases and asthma
A pan-European registry to monitor
the impact of allergic diseases and asthma
Allergic diseases and asthma stand as one of the most common chronic diseases globally, incurring a substantial global health burden.
However, their actual impact is difficult to estimate due to the lack of representativeness and incompleteness of relevant data.
In Europe, allergy care services are available in the majority of countries, but there is significant heterogeneity between centers and between countries.
Many allergic diseases are self-treated, treated by pharmacists or at the primary care level, without proper training in allergy, thus leading to a profound impact on quality of care and desired outcomes.
Delivering high quality allergy care throughout Europe requires documentation of management patterns together with a thorough evaluation of the impact of allergic diseases.
The main purpose of the HEAD registry is to harmonise allergic diseases and asthma management in Europe, under the auspices of EAACI.
Ioana Agache, EAACI
Maria Jose Torres, EAACI
The registry will study patterns of care, defined by the use of specific assessments and management options.
The impact of allergic diseases will be studied within a 12-month time horizon. The perspective for impact will be three-fold: a) medical, b) societal, and c) individual.
As patterns of care and impact may vary by disease, they will be evaluated separately in allergic rhinitis, asthma, atopic dermatitis, chronic urticaria, drug allergy, and food allergy. Additionally, as allergic diseases cluster together, an analysis for combinations of allergic diseases will be done.
Participation is restricted to centres previously agreed at the national level to ensure representativeness. If you want to be part of the HEAD registry, talk to your national allergy society coordinator.
Before entering data, the centres applying will be cross-checked with the steering committee and national coordinator. Once validated, the centres will be informed of how many patients with each condition they will have to recruit and enter in the registry.
Before entering any data, the researchers must attend a standardisation session and be certified for data entry.
Data will be collected both from the clinical records and directly from the patients, previous informed consent.
They will be entered into a secure REDCap electronic platform by the designated site researchers using web-based data entry forms and individual user identification and password. The eCRFs will be auditable, will include alerts and explanations, ranges, or warnings to facilitate data entry. The data collection platform complies with the EU regulations and is hosted in a secure server at the University of Malaga, Spain. All data entered will be duly anonymized.
