Research
Funding
MakesPersonalized Care for Children Possible
Literally meaning “hard skin” in Greek, scleroderma is a rare autoimmune disease that causes the skin—and sometimes internal organs—to thicken and tighten. While uncommon in adults, it is even rarer in children, where it tends to be more severe and less well understood. For affected children, this can mean years of misdiagnosis, chronic pain and progressive damage to vital organs, particularly in systemic scleroderma, the most aggressive form of the disease.
Pediatric rheumatologist Kathryn Torok leads a research lab focused on understanding and improving care for children with scleroderma. Her lab hosts the National Registry for Childhood-Onset Scleroderma, a vital national resource collecting long-term data and biological samples from children with the disease. It also serves as the main biorepository for pediatric localized scleroderma and systemic sclerosis research supported by the Childhood Arthritis and Rheumatic Disease Research Alliance, an organization behind nearly all North American studies in pediatric rheumatic diseases. By studying the immune system and genetics, Torok’s team is uncovering what drives scleroderma, how it evolves and how it can be treated more effectively. They are especially focused on identifying signals in blood and skin that could help doctors detect the disease earlier and tailor treatments to each child’s needs.