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. 2021 Nov 8;12:770001. doi: 10.3389/fneur.2021.770001

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