Research
Clinical Trials
Trial listings change constantly, so rather than reproducing a list that would be wrong within weeks, this page shows you how to search the registries yourself.
Where to search
- ClinicalTrials.gov — SJS/TEN with ocular involvement ↗
A pre-filtered search of the US registry. Change “ocular” to another term, or clear it, to widen the results.
- ClinicalTrials.gov — all Stevens-Johnson syndrome studies ↗
Everything registered under the condition, including observational studies and registries that are not drug trials.
- WHO International Clinical Trials Registry Platform ↗
Searches national registries worldwide, useful if you are outside the United States.
Reading a listing without getting lost
Check the recruitment status first
“Recruiting” means they are enrolling now. “Active, not recruiting”, “completed” and “terminated” all mean you cannot join, and a large share of results are in those states. Filter to recruiting before reading anything else.
Then the locations
Listings show every participating site. Many trials require in-person visits on a fixed schedule, so distance is usually the deciding practical factor. Some listings are stale about which sites are actually open.
Then eligibility
The inclusion and exclusion criteria are written for investigators, not patients, and are often more flexible in practice than they read. If you are close but not certain, contact the study team rather than ruling yourself out.
Contact the study coordinator, not the principal investigator
Every listing has a contact. The coordinator is the person who actually handles screening and will answer faster.
There are barely any SJS/TEN trials. Is that normal?
Yes. The condition is rare and acute, which makes randomised trials genuinely difficult to run — by the time someone is eligible they are critically ill. Much of the useful research is observational: registries, cohort studies, and long-term follow-up of survivors. Those are worth joining too.
Is there a registry I can join without being in a trial?
Registries collecting long-term outcome data do exist and are how much of what we know about the chronic phase was learned. See Ongoing Studies for what this program is running, and ask your burn center or eye department whether they contribute to one.
Should I pay to take part in a study?
Legitimate clinical trials do not charge participants for the intervention being studied. Be cautious of anything that asks you to pay to enrol, and check that it is registered on ClinicalTrials.gov or an equivalent national registry.