Research
Ongoing Studies
What the program is currently working on, and how survivors and clinicians can contribute to it.
Now enrolling
Have you had SJS or TEN? Join our national genetics study.SJS/TEN genetics study — now enrolling
A national study, led at the Illinois Eye and Ear Infirmary at the University of Illinois Chicago and funded by the National Eye Institute, looking for the genetic factors that make some people more likely to develop SJS/TEN. It is building a registry and sample collection with a particular focus on the eye. Survivors take part from home with a saliva kit sent by mail. Find out more and how to join.
Building a national SJS/TEN ophthalmic care network
People with SJS/TEN are usually treated in burn units. The eye damage that determines much of their long-term quality of life is treated by cornea and ocular surface specialists. Those two groups are not reliably connected, and the gap between them is where a great deal of preventable vision loss happens.
The program is mapping that connection across the United States: for every verified burn center, which academic institution it belongs to, which ophthalmology department or eye institute is attached, and how many cornea specialists practice there. The first release of that work is public:
- Burn center directory
132 burn units across 45 states, each with its associated academic institution and eye department, mapped by state.
- Ophthalmic care directory
The same network from the eye side — eye institutes and cornea services, de-duplicated across the burn units they serve.
Alongside it, the program maintains working directories of specialty lens provision — BostonSight PROSE clinics and EyePrintPRO and ScanFitPRO practitioners — because for many survivors a scleral device is what stands between them and functional blindness.
Other studies
Further studies from the program will be listed here as they open. For research elsewhere, the registries listed under Clinical Trials are the place to start.