Research study · Now enrolling
Have you had SJS or TEN?
We are looking for the genetic reasons some people develop Stevens-Johnson syndrome and toxic epidermal necrolysis — so that one day it can be prevented. You can take part from home.
- No visitsEverything happens by mail and online
- Saliva onlyNo needles, no blood draw
- Free shippingA prepaid return label comes in the box
Interested?
Get in touch and the study team will explain everything and answer your questions. Contacting us does not commit you to anything.
Why this study matters
SJS and TEN are rare, severe reactions — most often to a medication — that damage the skin and the eyes. Some people seem to be at much higher risk than others, and in a few cases a single gene has been found that explains why. For most people, the reason is still unknown.
This study is building a national registry and sample collection of people who have had SJS or TEN, with particular attention to the eye. By comparing the DNA of survivors, researchers hope to find the genetic risk factors that could let doctors screen patients before prescribing a drug that might trigger a reaction.
Who can take part
- You have been diagnosed with Stevens-Johnson syndrome (SJS) or toxic epidermal necrolysis (TEN)
- You are 2 years old or older — children take part with a parent or guardian’s permission
- You are willing to sign a consent form
- You are willing to provide a saliva sample
- You are willing to release your medical records about your SJS/TEN
You do not need to live near Chicago.
What taking part involves
Contact the study team
By email. We will explain the study, check that it is a good fit, and answer anything you want to know.
Sign the consent form
Online through Adobe Sign, or on paper — we can include a printed consent form in your kit with a return envelope. Children aged 7 and older are also asked for their own agreement.
Give a saliva sample at home
We mail you a collection kit with instructions. It takes a few minutes: you spit into a small tube.
Send it back — at no cost
Every kit includes a prepaid return shipping label. You do not pay for anything.
With your permission, the study team will also use information from your medical records about your SJS/TEN, including eye examinations. The consent form explains exactly what is collected.
Your privacy
Your sample is labelled with a study number, not your name. Only the study team at UIC can link that number back to you, and that link is kept securely and separately from the research data. Your address is used only to mail your kit and is not stored.
Taking part is entirely voluntary. You can change your mind and withdraw at any time, and choosing not to take part will never affect the medical care you receive.
Will taking part help me directly?
There is no direct benefit to you. The aim is to help future patients by making it possible to identify who is at risk before a reaction happens.
Are there any risks?
Giving a saliva sample is very low risk — some people notice a temporarily dry mouth. As with any genetic research, some people have feelings about genetic information; the study team is happy to talk this through before you decide.
Can my child take part?
Yes, if they are 2 or older. A parent or guardian gives permission, and children 7 and older are also asked whether they agree, in language suited to their age.
I had SJS/TEN many years ago. Can I still join?
Yes. The study includes people at any point after their illness.