About The Sjögren-Larsson Syndrome (SLS) Network Community Registry

The Sjögren-Larsson Syndrome Network (SLS) Community is a network that provides support, education, and awareness to patients, family, and friends affected by SLS.  It is important to note that SLS is very different from Sjogren’s Syndrome.

SLS is a rare genetic disease that affects approximately 1 in 250,000 individuals and is characterized by dry scaly skin, neurological problems including developmental delay, and eye problems. These symptoms are apparent by early childhood..

SLS is caused by mutations in a gene called ALDH3A2, a gene that provides instructions for making an enzyme called fatty aldehyde dehydrogenase (FALDH). The enzyme helps break down fatty aldehyde molecules. When these molecules cannot be broken down, they accumulate and interfere with the normal function of the skin, brain, and eyes.

Mission: Our mission is to connect the SLS community in order to build a vital support network that can help patients, their families, and caregivers effectively manage SLS and to raise awareness for appropriate early diagnosis, treatment options, and development of therapeutics.

How will my information be used?

Information from the Sjögren-Larsson Syndrome Network (SLS) Community Registry will be used to further understand SLS and to assist in development of new treatments. The data will help scientists to better understand the disease and the databank may also be used to contact patients about clinical trials, including those investigating new treatments, for which they may be eligible. Participation in a clinical trial will be based upon the voluntary consent of the patient and study-specific eligibility requirements. If notified of a clinical trial, patients will need to initiate contact with interested researchers as researchers will not be able to obtain patient contact information from the registry.