The mission of the registry is to establish a unique database with a large prospective cohort of patients with Hidradenitis suppurativa. This registry is designed to collect (after having obtained informed patient authorisation or equivalent) data on the current status and follow-up of patients with Hidradenitis suppurativa, including:
- Demographic data
- Clinical data
- Treatment strategy
- Quality of life
The registry ultimately aims to provide a better understanding of Hidradenitis suppurativa, to improve the management of Hidradenitis suppurativa patients and enhance clinical outcome.
Participating centers are commited to making analyzed data public by publishing data in peer-reviewed journals and referencing them on the HSR website.
Who can use the database?
The database is available for by specialist dermatologist. Please apply to the HSR for a user account.
Which patients can be included?
All patients with HS can be included in the Registry, irrespective of their therapy. The sole criterion for inclusion of a patient is their written Declaration of Informed Consent. Please give your patients full information on the project before including them in the Registry. For this, please use the Patient Briefing (DE/FR/IT).
What data is collected?
Various different levels of data are collected, giving dermatologist a broad base on which to arrive at assessments of HS profiles and help them with therapy titration.
The CRF's are based on the EHSF questioners. Below you will find the Variable list of the questioners for harmonised report.