Table 1.
Major population-and clinic-based ALS registries and collaborative research platforms in North America.
| Name | Sponsor/ Partner | Country | Enrolled patients | Data types |
|---|---|---|---|---|
| North American population-based registries | ||||
| National ALS Registry1 | Agency for Toxic Substances and Disease Registry (ATSDR). Centers for Disease Control and Prevention (CDC) |
US | 17,000 patients with confirmed ALS (2020) | • Sociodemographic characteristics, occupational history, military history, cigarette smoking, alcohol consumption, physical activity, family history of neurodegenerative diseases, and disease progression |
| National ALS Registry Biorepository | ATSDR, CDC | US | 330 ALS patients with at least one biosample | • Biospecimens: blood, urine, hair, nail clippings; postmortem samples: brain, spinal cord, CSF, bone, muscle samples |
| Canadian Neuromuscular Disease Registry (CNDR) | University of Calgary | Canada | 1,085 patients with ALS | • Clinical data, demographic characteristics, PROs • CRF available |
| North American clinic-based registries | ||||
| VA Biorepository Brain Bank | Veterans Affairs (VA) | US | 287 veterans with ALS | • Clinical data, demographic characteristics, PROs; neurologic tissue specimens |
| Muscular Dystrophy Association (MDA) ALS Registry/MOVR Data Hub MOVR: NeuroMuscular ObserVational Research |
MDA | US | 2,685 patients at MDA clinics across country | • Comprehensive clinical, PRO, genetic data; pts seen at MDA clinics • Incorporates data from smartphones, wearable devices |
| North American consortia/collaborative platforms | ||||
| Target ALS | Target ALS | US | • Makes results broadly available to ALS researchers • Makes available tissue specimen and samples, associated clinical data |
|
| NEALS (Northeast Amyotrophic Lateral Sclerosis Consortium) | NEALS | US | 342 patients, including 28 cases of ALS, 163 cases of non-neurologic controls, and 151 cases of neurologic controls (non-ALS) | • Makes results broadly available to ALS researchers • Makes available tissue specimen and samples, associated clinical data |
| CReATe Consortium (Clinical Research in ALS and Related Disorders for Therapeutic Development) | CReATe | US | 750 patients including sporadic, familial and presymptomatic mutation carriers | • Makes results broadly available to ALS researchers • Makes available tissue specimen and samples, associated clinical data |
| Genomic Translation for ALS Care (GTAC) | GTAC | US | 1,500 patients | • Clinical data, demographic characteristics, PROs; neurologic tissue specimens and samples |
| Answer ALS | Answer ALS | WW | 1,000 patients from 10 centers | • Clinical data, demographic characteristics, PROs; neurologic tissue specimens and samples |