PLS Natural History Study
This study will provide a strong basis and foundation for future clinical trials that use historical controls. The study will collect clinical data and biological specimens to create a dataset and biorepository to be shared with other researchers as a foundation for future clinical trials.
This is a volunteer study for participants diagnosed with Primary Lateral Sclerosis (PLS) or suspected to have PLS by a neurologist. You will be expected to attend scheduled visits in person or by telephone, complete study testing and audio/video recordings. The study includes clinical measurements to assess disease status and motor function, a number of questionnaires, collection of biospecimens including DNA, blood, and urine, and an electromyography (EMG) test. There will be 6 visits over 24 months, of these 6 three will be in-person visits (2-3 hours) and the other three will be telephone calls (lasting about 45 minutes to an hour). Blood and urine samples will be collected during these visits.
$100 per in person visit (three) and $50 for telephone visit (three) completed.
Symptom onset was no more than 15 years prior to baseline
Ability to independently walk with or without an assistive device (e.g., walker) at the baseline evaluation
In cases where a molecular test has been done prior to enrollment in this study, HSP or HSP-related mutations are negative
Expected to have at least some bulbar symptoms (dysarthria, dysphagia, drooling or pseudobulbar affect); however, the absence of these symptoms will not exclude participants when molecular testing is negative for known HSP
UMN symptoms and signs only in the legs
Unwilling or unable to visit the study site asrequired
Clinically obvious cognitive impairment that precludes obtaining informed consent, as determined by the site PI
Participating in clinical treatment trials