Registry Goals

In 2016 a few leading international centers with expertise in the management of severe adverse cutaneous drug reactions (severe drug-induced allergic skin rash) around the world saw the need for internationally representative registry data to further the understanding of the most severe adverse cutaneous drug reactions, namely Toxic Epidermal Necrolysis (Lyell’s Syndrome, Steven’s Johnson Syndrome).

The mission of the registry is to establish a unique worldwide database with a large prospective cohort of patients with Toxic Epidermal Necrolysis (TEN) and Steven’s Johnson Syndrome (SJS). 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 SJS and TEN, including:

• Demographic data
• Clinical data
• Treatment strategy
• Quality of life
• Geographic variation
• Outcome

This registry is also designed to collect (optional) biological sample material (blood, small skin biopsy, DNA*) for research purposes.

Our main goals are to:

• Compare clinical practice regarding diagnosis and management.
• Obtain and monitor real-time data concerning short- (30-day) and long-term disease outcome.
• Monitor and compare causative substances (medications) over time and within different regions/ethnic backgrounds.
• Analyse prospectively the value of different treatment strategies.
• Perform research to better understand the pathophysiology, identify predictive markers of disease and new therapeutic strategies.

All centers entering data have received ethical approval and all patient data within the registry is pseudonymised.