Allergic diseases, such as asthma, hay fever, eczema, and food allergies, affect around 20% of children in European countries and early onset severe disease often persists into adulthood. The impact on quality of life and health care resources is comparable to diabetes and rheumatoid arthritis. Furthermore, immediate allergic reactions, for instance to foods and drugs, can be life threatening.
Over past years, patient, disease and treatment registries have become increasingly recognised as important tools to improve standards of clinical care, for instance through data on the short and long-term efficacy and safety of therapies, especially where running a clinical trial is difficult due to the need for long-term follow up and also in case of rare conditions. Registry data also allow to analyse quality of care, for instance by benchmarking medical care against current evidence-based guidelines.
While a number of medical specialties developed disease and treatment registries years back, for instance for diabetes and cardiovascular disease, there is still a lack of such registries within the allergy field, although a few national initiatives have recently been started (eg. drug allergy (Pascal Demoly, France; http://www.dahd.net/), anaphylaxis (Margitta Worm, Germany; http://www.anaphylaxie.net), and chronic hand dermatitis (Christian Apfelbacher, Germany; http://www.carpe.dermis.net). Even where such national projects exist, there clearly is potential and need to extend such registries across European countries, using a standardised methodology to optimise the potential benefit of these registries for clinicians and researchers but also to ensure patient safety across European country borders.
We therefore set up a Task Force on allergic disease registries in late 2011 with the overall objective to provide a platform for the formation of allergic disease registries across EU country borders to develop suitable monitoring tools for use in both clinical practice and research. We also want to help standardisation of data collection on allergic diseases, diagnosis and treatment and ultimately improve allergic disease and allergen exposure management.
The A-reg project will initially focus on two national allergic disease registries to grow into pan-European projects, namely anaphylaxis (Prof M Worm) and drug allergy (Prof Pascal Demoly). Two further therapy-related projects are planned to be started de novo, one on cutaneous and systemic side effects of immunotherapy (Dr Moises Calderon) and one on immunosuppressive therapies in patients with severe atopic dermatitis (Dr Carsten Flohr). The main advantage of starting a registry in several European reference centres at the same time is that the same methodology ensures direct comparability from the start. We also plan to incorporate biobanking in all of these registries for research purposes.
It is anticipated that these four projects will inform the development of further allergic disease/therapy registries, especially with regard to methodology (data collection, software use, data analysis and ethics).
As we are very keen to learn from similar initiatives on other diseases across Europe and exchange information and experiences on registry development, we have joined forces with the EU PARENT Programme (cross-border PAtient REgistries iNiTiative) as an official Partner Organization. The main aim of the PARENT Programme is to support EU member states in developing comparable and coherent patient registries in fields where this need has been identified (e.g. chronic diseases, rare diseases, medical technology) with the aim to rationalize and harmonize the development and governance of patient registries for public health and research purposes.
A-reg Task Force members:
Prof Nikos Papadopoulos, Chair
Dr Carsten Flohr, Secretary
Dr Christian Apfelbacher
Prof Peter Burney
Dr Moises Calderon
Dr George Konstantinou
Prof Pascal Demoly
Prof Aziz Sheikh
Prof Margitta Worm
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Last updated 10 November 2014