Primary lateral sclerosis (PLS) has been largely neglected in terms of research, primarily because it is so rare. The purpose of this study is to change the current research status of PLS by collecting clinical data and biological specimens to create a dataset and biorepository (a collection of biological specimens) to be shared with other researchers and used in future clinical trials. The study focuses on individuals who have early PLS (less than 48 months after onset of PLS symptoms) or well-established PLS (more than 48 months but less than 15 years since onset of PLS symptoms).
Researchers will use multiple assessments, including measures of disease status, motor function, quality of life, cognition, and collection of biological specimens, including DNA, blood, urine, and electromyogram (EMG) test. Some study visits and procedures will be done in person, and others will be done via telephone. Scientists hope that the data collected from this study will help develop new ways to treat, cure, or even prevent diseases.
PLS Natural History Study