An observational study in Frontotemporal Degeneration (FTD), ALS (Amyotrophic Lateral Sclerosis) and Primary Progressive Aphasia (PPA), sponsored by University of Pennsylvania. Recruiting at 1 site in United States. Open to participants aged 18 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2026-09-01.
Sponsored by University of Pennsylvania · Observational
Among 438 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 438 studies in Amyotrophic Lateral Sclerosis with a site in United States, this one is the 18th largest by planned enrollment of the 120 observational ones, is one of 27 that started in 2025, is one of 120 observational ones, reaches primary completion later than 125 of the 126 other live ones, and was the 429th registered.
978 studies on the registry are indexed under Amyotrophic Lateral Sclerosis; 277 are open to participants now.
This study's planned enrollment of 1,000 is above the median of 108 across 265 observational studies indexed under Amyotrophic Lateral Sclerosis.
Browse Amyotrophic Lateral Sclerosis studies →98 of the 438 studies in Amyotrophic Lateral Sclerosis with a site in United States are open now, in 12 countries. Each count lists the studies.
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 · healthy volunteers too.
The full table on the hub →438 studies; the count open now beside each. This study's row is marked.
First in 1982; this study’s year is marked. 27 started in 2025.
Median enrollment 34 across the 306 interventional studies, 100 across the 120 observational. Of the 277 that completed or were terminated, 102 (37%) have results posted.
163 of 438 have an industry lead sponsor. The 10 most frequent:
University of Pennsylvania is the lead sponsor of 1,668 studies on the registry; 235 are open to participants now.
Of its 158 completed or terminated interventional studies of FDA-regulated products, 109 (69%) have results posted.
University of Pennsylvania has 4 studies filed under Amyotrophic Lateral Sclerosis — fewer than ten, so there is no comparison to draw.
42 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 |
Among the 438 studies in Amyotrophic Lateral Sclerosis with a site in United States, from their registry updates:
The aim of this study is to contribute to and continue to sustain a repository of blood samples, nucleic acid (DNA and/or RNA) samples, family history information, and other demographic information from individuals with age-related neurodegenerative conditions, or their family members who may or may not be at risk for similar conditions. This study will continue to further expand research into the molecular and genetic basis of these diseases and their risk factors.
This study will recruit adults over the age of 18 who fit into one of the three study groups defined in the eligibility criteria above.
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:
People with a clinical diagnosis of a neurodegenerative disease including, but not limited to Alzheimer's disease (AD), Parkinson's disease (PD), Parkinson's disease dementia (PDD), dementia with Lewy bodies (DLB), frontotemporal dementia (FTD), amyotrophic lateral sclerosis (ALS), progressive supranuclear palsy (PSP), primary progressive aphasia (PPA), limbic-predominant age-related TDP-43 encephalopathy (LATE), corticobasal syndrome (CBS), posterior cortical atrophy (PCA), primary lateral sclerosis (PLS), primary muscular atrophy (PMA), or individuals with a suspected neurodegenerative dementia and/or movement disorder of unknown etiology will be considered for enrollment.
Family Members of individuals who meet the criteria of group 1, who are people who may or may not be at risk for a similar neurodegenerative disease, who may or may not be symptomatic, and who may or may not have known or unknown genetic risk.
People with no known neurological disease who will provide control data.
To contribute to and continue to sustain a repository biological samples and data from individuals with age-related neurodegenerative conditions.
To contribute to and continue to sustain a repository of blood samples, nucleic acid (DNA and/or RNA) samples, family history information, and other demographic information from individuals with age-related neurodegenerative conditions.
Time frame: This is a natural history study-participants are followed from date of enrollment until death, withdraw, or funding is no longer available, or until 600 months have passed.
To collect and bank data and biospecimen samples
To collect and bank data and biospecimen samples locally and at collaborating data and biobank repositories in support of neurodegenerative disease research. Data and biospecimen samples may be collected as part of an external protocol (e.g., a different Penn IRB-approved observational protocol, clinical trial, or consortium study) in which participants may be co-enrolled
Time frame: This is a natural history study-participants are followed from date of enrollment until death, withdraw, or funding is no longer available, or until 600 months have passed.
To collect data and biospecimen samples from people who wish to participate in research but are unable to participate or do not meet eligibility criteria for other research protocols at our lab.
To collect data and biospecimen samples from people who wish to participate in research but are unable to participate or do not meet eligibility criteria for other research protocols at our lab, e.g., a carrier of a rare genetic variant associated with a neurodegenerative disease.
Time frame: This is a natural history study-participants are followed from date of enrollment until death, withdraw, or funding is no longer available, or until 600 months have passed.
To extend analysis, maintenance, and sharing of existing data.
To extend analysis, maintenance, and sharing of existing data, imaging, and biospecimen samples collected by our lab under previous research protocols
Time frame: This is a natural history study-participants are followed from date of enrollment until death, withdraw, or funding is no longer available, or until 600 months have passed.
Plan to share: No — This is an observational trial, and there is no benefit to sharing IPD.
Started Dec 2025 (actual). Primary completion is estimated for Jan 2070, 528 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 528 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.
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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 →