Natural History Study Data Repository for ALS and Other Motor Neuron Diseases Including PLS, PMA, Kennedy Disease, and PBP

What this Trial Is About

Researchers are collecting data in a natural history study focusing on ALS and other motor neuron disorders MND such as Primary Lateral Sclerosis, Kennedy Disease, Progressive Muscular Atrophy, and Progressive Bulbar Palsy. The study aims to build a comprehensive data repository capturing clinical information and disease progression from patients attending participating clinical sites. The research platform, NeuroBANK, supports linking clinical data with biological samples and imaging information from multiple studies. Participants diagnosed with ALS or other MNDs provide baseline data including demographics, disease history, and family history. During each clinical visit, sites collect disease-specific outcomes and events over time, which are entered into NeuroBANK. The study allows collection of additional biomarker and outcome data through over 20 extra forms. Data collected are anonymized and shared with medical researchers via a controlled license. Participants are asked for consent during routine clinical visits, after which they receive a unique identifier to link their data across studies. The study involves regular follow-ups every 3 to 4 months for up to 5 years, including assessments like ALS Functional Rating Scale-Revised, lung function, survival tracking, neurological exams, and physical tests. Data quality is monitored, and biological samples and imaging studies may also be collected and linked within the platform. The total participation duration can last up to five years with ongoing data collection.

ALS/MND Natural History Study Data Repository