Recruitment Underway for Sjogren-Larsson Syndrome Study
Participant Recruitment for Research Study on Sjögren-Larsson Syndrome
Sjögren-Larsson syndrome (SLS) is a rare form of ichthyosis characterized by the co-presence of neurologic symptoms, such as spasticity and intellectual disability. Not enough is known about SLS and its complications, and therapeutic options are limited. The Rare Diseases Clinical Research Network, funded by the National Institutes of Health, is supporting a research study on SLS to gather clinical information about its natural history and search for biomarkers (tests) that can be used to monitor future therapy. We invite you to participate. SLS patients and at least one parent will be asked to travel to one of three participating study centers (Omaha, NE; Portland, OR; and Pittsburgh, PA) and take part in an extensive 3-day clinical evaluation. Costs for travel, housing and medical tests will be covered as part of the study. This is a unique opportunity for SLS families to contribute to research on this disease.