Scientists and patients will gather in Vancouver today to discuss the advances and unmet needs in a drug-induced disease, Stevens-Johnson syndrome/Toxic epidermal necrolysis (SJS/TEN).

Murdoch University’s Professor Elizabeth Phillips, a renowned expert in immune-mediated adverse drug reactions, will co-chair the conference, SJS/TEN 2019: From Science to Translation.

“The focus of the meeting is to discuss new discoveries and future directions in the treatment of SJS/TEN, which currently has a mortality rate of up to 50 per cent,” Professor Phillips said.

“The condition is caused by people having allergic reactions to common drugs such as antibiotics, which in many instances can result in the patient presenting with symptoms more severe than a third degree burn all over their body.

“We are trying to discover why these reactions occurs, and identify genetic markers that predict the risk of individual patients.

“Ultimately we would like to develop new strategies for earlier and more precise diagnosis and targeted treatments to help identify and provide better outcomes.”

Professor Phillips said the involvement of patients was a key part of the meeting, and the 34 SJS/TEN survivors and families attending would play an important role in helping scientists to understand the personal toll of the condition.

Survivor stories a key feature

“A particularly special part of the meeting will be a session tonight that will exclusively feature the stories from families who have lost loved ones to SJS/TEN and those who have survived the disease who now have long-term effects,” Professor Phillips said.

“We will hear from survivors of SJS/TEN, who can relay struggle with the acute disease as well as ongoing problems such as blindness, reproductive difficulties and depression and other chronic ailments that they have suffered as a result of this disease.”

Professor Phillips is director of the Centre for Clinical Pharmacology and Infectious Diseases at the Institute for Immunology and Infectious Diseases at Murdoch University and is the John A. Oates Chair in Clinical Research and Professor of Medicine and Pharmacology at Vanderbilt University.

This meeting is funded through a grant from the NIH, US FDA, Canadian Institute for Health Research, Murdoch University and many other supporters and there will be attendees from the US NIH, FDA and many other government agencies as well.

SJS/TEN 2019 will run over the next two days.