ALS and Motor Neuron Disorders Natural History Study Data Repository Collecting Clinical and Biological Data for Research

What this Trial Is About

Researchers are collecting detailed clinical and observational data from people diagnosed with ALS and other motor neuron disorders through a multi-site, multi-protocol natural history study. This study gathers baseline information such as demographics, disease history, and family history, and it tracks disease-specific outcomes over time. The data are stored in NeuroBANK, a patient-centered clinical research platform that links clinical information with biological samples, images, and other research data from these patients. Participants with ALS or related motor neuron diseases attending clinics at study sites are offered enrollment. Consented individuals receive unique neurological identifiers that connect their clinical data with biological specimens and imaging studies. The study optionally collects biomarker data and multiple outcome measures, which are anonymized and shared with medical researchers. This platform supports ongoing clinical research by linking past and current studies with biological and imaging data. During routine clinic visits, participants provide longitudinal clinical and phenotypical data, which are transcribed and entered into NeuroBANK. Researchers monitor outcomes such as the ALS Functional Rating Scale-Revised, Slow Vital Capacity, and survival every 3 to 4 months for up to five years. The study involves data quality checks and trained site personnel managing patient data while ensuring patient privacy through anonymization. Participation duration depends on ongoing clinical visits and data collection over the years.

ALS/MND Natural History Study Data Repository