An observational study in Amyotrophic Lateral Sclerosis, ALS-Frontotemporal Dementia and Primary Lateral Sclerosis, sponsored by University of Miami. Recruiting at 11 sites in United States. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2026-06-15.
Sponsored by University of Miami · Observational
Among 440 studies in Amyotrophic Lateral Sclerosis with a site in United States — 98 open to participants now, 129 under way, 11 of them phase 3. Amyotrophic Lateral Sclerosis · United States.
Among the 440 studies in Amyotrophic Lateral Sclerosis with a site in United States, this one is the 16th largest by planned enrollment of the 121 observational ones that give a count, is one of 20 that started in 2018, is one of 121 observational ones, reaches primary completion later than 114 of the 128 other live ones, and was the 211th registered.
978 studies on the registry are indexed under Amyotrophic Lateral Sclerosis; 277 are open to participants now.
Browse Amyotrophic Lateral Sclerosis studies →98 of the 440 studies in Amyotrophic Lateral Sclerosis with a site in United States are open now. Recruiting first, the newest first:
Johns Hopkins University · Sites in United States
Ages 18–80
Cognixion · Sites in United States
Ages 18+
Johns Hopkins University · Sites in United States
Ages 18+ · Healthy volunteers
Neuralink Corp · Sites in United States
Ages 18+
Biogen · Sites in United States
Ages 18+
A study can be open while its sites in United States have not opened yet or have stopped. Only those recruiting at a site in United States →
Of the 192 Amyotrophic Lateral Sclerosis studies recruiting now, 117 (61%) set no upper age limit and 23 (12%) stop at 75 or younger; 15 take children under 18; 55 take healthy volunteers.
This study: 18 Years and older · all sexes · no healthy volunteers.
The full table on the hub →This tab as a report to print or save as PDF → With an account.
440 studies; the count open now beside each. This study's row is marked.
A study in two phases is counted once above. Listed by phase, each with its combined phases: Phase 1 89 · Phase 2 139 · Phase 3 48 · Phase 4 1
First in 1982; this study’s year is marked. 20 started in 2018.
By drug class, each counting the studies that test any of its medicines:
This study's planned enrollment of 1,200 is above the median of 108 across 265 observational studies indexed under Amyotrophic Lateral Sclerosis.
Median enrollment 33 across the 307 interventional studies, 100 across the 121 observational. Of the 277 that completed or were terminated, 102 (37%) have results posted.
This tab as a report to print or save as PDF → With an account.
163 of 440 have an industry lead sponsor. The 10 most frequent:
University of Miami is the lead sponsor of 842 studies on the registry; 166 are open to participants now.
Of its 115 completed or terminated interventional studies of FDA-regulated products, 97 (84%) have results posted.
University of Miami has 8 studies filed under Amyotrophic Lateral Sclerosis — fewer than ten, so there is no comparison to draw.
41 of the studies in Amyotrophic Lateral Sclerosis with a site in United States that are under way reach primary completion within a year, 6 of them phase 3. Phase 3 first, then by date:
| Study | Primary completion |
|---|---|
| NCT07161999Phase 3Coya TherapeuticsStudy of COYA 302 for the Treatment of ALS | 2027-04 |
| NCT04057898Phase 3MediciNovaEvaluation of MN-166 (Ibudilast) for 12 Months Followed by an Open-label Extension for 6 Months in Patients With ALS | 2027-04 |
| NCT04297683Phase 3Merit E. Cudkowicz, MDHEALEY ALS Platform Trial - Master Protocol | 2027-07 |
| NCT07410806Phase 3Merit E. Cudkowicz, MDHEALEY ALS Platform Trial - Regimen I NUZ-001 | 2027-07-01 |
| NCT04220190Phase 3Rapa Therapeutics LLCRAPA-501 Therapy for ALS | 2027-07-01 |
Add all 41 to your calendar (.ics) → With an account.
Among the 440 studies in Amyotrophic Lateral Sclerosis with a site in United States, from their registry updates:
This tab as a report to print or save as PDF → With an account.
The purpose of the Clinical Procedures To Support Research (CAPTURE) study is to utilize information collected in the medical record to learn more about a disease called amyotrophic lateral sclerosis (ALS) and related disorders.
The study will consent patients with ALS or related disorders that are receiving care at a clinical center in the CReATe consortium that uses Epic as its electronic health record (EHR) system. The study aims to systematically gather a clinical dataset through the EHR using a standardized approach to characterize the natural history of ALS and related diseases.
Affected patients receiving care at a clinical center that uses Epic as EHR.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Affected with ALS or a related disorder.
Using the ALS Toolkit for collecting and using electronic health record data for research purposes
Time frame: 12 months
Not enrolling at this site.
Plan to share: No
No publications or documents are linked to this record.
Started Feb 2018 (actual). Primary completion is estimated for Jun 2032, 172 months after the start.
Of 127 non-industry observational studies under Amyotrophic Lateral Sclerosis, half reached primary completion within 67 months of starting (the median), counting those still running; a quarter within 30 and three quarters within 125. This study's planned 172 months is above that.
Counting every sponsor, half of 136 studies reached it within 64 months; a quarter within 29 and three quarters within 114.
How these figures are worked out, and which studies are left out of them.
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
Sign in to followQuestions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.
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Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.
Amyotrophic Lateral Sclerosis →