Objective
Primary lateral sclerosis (PLS) is a neurodegenerative disease. It has some similar symptoms to amyotrophic lateral sclerosis (ALS), but is characterized by progressive loss specifically to upper motor neurons. There is limited information about PLS natural history because PLS patients represent only 1-4% of adults with motor neuron diseases. The Northeast ALS Consortium (NEALS) gathered data from PLS patients from 2000-15 to improve knowledge of the disease.
Conclusions
The NEALS PLS Registry represents the largest available aggregation of longitudinal clinical data from PLS patients and describes the expected natural course of disease progression. Data from the registry will be available to the PLS community and can be leveraged to plan future clinical trials for this rare disease.