SJS/TEN Medical Research

SUMMARY OF THE ACTIVE SJS/TEN STUDIES AT VANDERBILT

Donate to SJS/TEN Research (vanderbilthealth.org)

1. North American Therapeutics In Epidermal Necrolysis Syndrome Study:
NATIENS is a clinical trial for Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis patients in the acute stage. This study aims to determine if two therapeutic treatments– cyclosporine and etanercept– are effective in improving the short-term outcomes of SJS/TEN compared to the typical standard of care.

2. SJS Survivor Study:

The purpose of the SJS Survivor study is to recruit individuals who have been diagnosed with Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN). This will be used to identify the nature and risk for long-term complications of SJS/TEN and genetic risk factors associated with drug induced SJS/TEN that will translate into improved pre-prescription preventive strategies and care of SJS/TEN.

This study requires review of medical records during the time of SJS/TEN diagnosis and treatment. If you participate, you must submit your medical records to the study team to be reviewed by a panel of dermatologists. Individuals who continue in the study will be mailed an Oragene kit to their home and asked to provide a one-time oral saliva sample. Participants will also complete a series of questionnaires about their physical and mental health since their SJS/TEN diagnosis.

Who can participate? Adults & Children between the ages of 7 – 90 years old who have self-identified as having SJS/TEN related to a medication/drug they have taken.
Complete Vanderbilt’s survey at the link below: https://redcap.vanderbilt.edu/surveys/?s=WDKRMTR9J9

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