Research

Why the evidence here is thinner than you would expect

SJS/TEN affects somewhere between one and nine people per million a year. That rarity shapes everything about its research: randomised trials are hard to run because eligible patients are critically ill and few, individual centers see a handful of cases, and much of what is known comes from registries, case series, and long-term follow-up rather than from the kind of trials that settle arguments.

It also means the most decisive advances have been in prevention — screening for specific HLA alleles before certain prescriptions — and in limiting damage during the acute phase, particularly to the eye, rather than in curing the condition once it starts.

These pages cover what this program is working on, how to find studies you could join, where the field is heading, and how to support it.