02 November 2017

Development of a European Hidradenitis Suppurativa Registry

The project was selected in 2015 and the EADV financial support applied for the years 2016-2017. The objective of the project was the development of a European registry for hidradenitis suppurativa patients which would aim to recruit and enroll all patients with hidradenitis suppurativa diagnosed and treated in the participating centers. Hidradenitis suppurativa is a multifactorial, chronic, recurrent, debilitating, inflammatory skin dis­ease, which can lead to severe scarring and disability and is associated with reduced quality of life, depression, working disability, pain, social stigmatization and several cardiovascular risk factors. At the time of initiation of the registry, HS was an under-recognized and under-studied skin disease. The only available registry at that time point was the Norwegian one (HISREG) in a national level.

So the first goal and achievement of this registry was the establishment and organization of a network of centers and dedicated physicians in a European level that agreed to register a core data set of important variables, both physician and patient rated, in specific time points. A web based system was developed for data capture to ensure appropriate collection of data, monitoring, storing and valid reviewing. This goal was achieved and facilitated also the education and progress of a young dedicated scientist, Dr Mathilde Daxhelet, who, under the supervision of Prof. Del Marmol, coordinated this effort. The first article was published in JEADV (Daxhelet M, et al. Establishment of a European Registry for hidradenitis suppurativa/acne inversa by using an open source software. J Eur Acad Dermatol Venereol 2016; 30: 1424-6) and further strengthened the co-operation of centers.

The registry also facilitated the capture of daily clinical data in a secure and efficient manner in the relevant centers along with the early dissemination of valid evidence in a European level. Once the co-operation started, initiation of common research efforts and networking became much easier. This was highlighted in the European effort to create a validated tool for the dynamic severity assessment of hidradenitis suppurativa. Such a validated tool was lacking. The European Hidradenitis Suppurativa Foundation took the initiative to commence a pan-european effort to create and validate such a novel scoring system. The EADV supported registry was the perfect platform to assist such an effort. With close co-operation the new score was created, validated and recently published (Zouboulis CC, et al.Development and validation of IHS4, a novel dynamic scoring system to assess hidradenitissuppurativa /acne inversa severity. Br J Dermatol 2017). This is a clear example of the scientific value and strength of such a registry.

Currently, centers from 16 european countries along with centers from Canada and Australia co-operate and participate in the registry. The registry will continue to exist even after the end of the EADV financial support. This registry would be the perfect platform to facilitate study of many clinical and epidemiological hypotheses. Such a registry will provide real life data and post marketing surveillance. It will facilitate development of predictive models, will lead to multiple benefits both on clinical and research level and will enhance a european collaboration further.

The EADV supported registry facilitated the close co-operation of centers from 16 European countries along with centers from Canada and Australia as well.

The biggest investment a scientific society like EADV can make is promoting research and education. The projects selected by the EADV Project Proposal Review Committee promote exactly these aspects in a European level.

Author: Dr T. Tzellos