Recruiting

Neurodegenerative Research

Sponsor:

University of Pennsylvania

Code:

NCT04715399

Conditions

Frontotemporal Degeneration(FTD)

Primary Progressive Aphasia(PPA)

Familial Frontotemporal Lobar Degeneration (fFTLD)

Amyotrophic Lateral Sclerosis(ALS)

Lewy Body Disease(LBD)

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Accepted

Interventions

No intervention

Study Details

Brief summary:

The aim of this study is to create a repository of both cross-sectional and longitudinal data, including cognitive, linguistic, imaging and biofluid biological specimens, for neurodegenerative disease research and treatment.

Conditions

Frontotemporal Degeneration(FTD)

Primary Progressive Aphasia(PPA)

Familial Frontotemporal Lobar Degeneration (fFTLD)

Amyotrophic Lateral Sclerosis(ALS)

Lewy Body Disease(LBD)

Study ID

NCT04715399

Start date

May 29, 2020

Status verified date

Jan, 2026

Completion date

May 30, 2070

Anticipated

Primary completion date

May 30, 2070

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Accepted

Inclusion Criteria:

This protocol will include 3 groups of people:

1. People with a clinical diagnosis of a neurodegenerative disease. such as frontotemporal degeneration(FTD), primary progressive aphasia(PPA), Lewy body disease(LBD), amyotrophic lateral sclerosis(ALS), progressive supranuclear palsy(PSP), corticobasal syndrome(CBS), posterior cortical atrophy(PCA), Alzheimer's disease(AD), Parkinson's disease(PD)
2. People with a family history of neurodegenerative disease who may or may not be symptomatic, and may or may not be mutation carriers such as familial frontotemporal lobar degeneration (fFTLD) or familial ALS,
3. People with no known neurological disease who will provide control data.

Exclusion Criteria:

  • Anyone who is under the age of 18.
  • Anyone with a condition or in a situation which, in the Investigator's opinion, could confound the study findings or may interfere significantly with a person's participation, including but not limited to neurological, psychological and other medical conditions (such as cardiac, neurosurgical, infectious conditions).
  • Individual participants may be excluded from some, but not all, study procedures for safety reasons when they have a contraindication or at the discretion of the Investigator. For example, persons with metal implants which are not MRI-safe will not be able to take part in imaging, and those on blood thinning medications may not be able to take part in lumbar puncture.
  • Pregnant women; if a woman becomes pregnant during the study, research activities that may increase risk to the patient and the unborn fetus will be stopped until the end of pregnancy, at which point participation can be resumed.

Study Design

Enrollment

1000 participants

Anticipated

Interventions and Outcome Measures

Arms

Cross-sectional

Longitudinal

Interventions

No intervention

No intervention

Primary outcome measure

  • Status of progression - changes in neuropsychological tests. [ 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. ]

Central Contacts and Locations

Locations

University of Pennsylvania

Recruiting

Philadelphia, Pennsylvania, United States, 19104

Contacts

More Information

Sponsor

University of Pennsylvania

Last update posted

Jan 22, 2026

Last verified

Jan, 2026

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-08. This information was provided to ClinicalTrials.gov by University of Pennsylvania on 2026-01-22.