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UPenn Observational Research Repository on Neurodegenerative Disease

This study, called the UPenn Observational Research Repository on Neurodegenerative Disease, aims to collect information over time from people with neurodegenerative diseases like Frontotemporal Degeneration (FTD), Primary Progressive Aphasia (PPA), and Amyotrophic Lateral Sclerosis (ALS). There are no interventions or treatments being tested. Researchers want to understand how these diseases progress by looking at changes in thinking and memory tests. The study is open to adults aged 18 and older who have a clinical diagnosis of a neurodegenerative disease. The goal is to build a large collection of data, including cognitive, language, imaging, and biological samples, to help with future research and treatments for these conditions. The current status of the study is unclear.

Study design
This is an observational study with a planned enrollment of 1000 participants. It is designed to follow participants over a long period to understand the natural course of neurodegenerative diseases.
What's involved
Participants will be followed from the date they join the study until death, withdrawal, or funding ends, or for up to 600 months (50 years). The record does not specify the frequency or type of visits, procedures, or tests.
Compensation
Not stated in the trial record.
Follow-up
Participants are followed from the date of enrollment until death, withdrawal, or funding is no longer available, or until 600 months have passed.

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NCT04715399

UPenn Observational Research Repository on Neurodegenerative Disease

Recruiting
Not specifiedAges 18+Observational
University of Pennsylvania
~1,000 participants
Updated 2026-01-22 on ClinicalTrials.gov
What's tested:No intervention

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Status of progression - changes in neuropsychological tests.
Measured over 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.

Conditions

Frontotemporal Degeneration(FTD)
Primary Progressive Aphasia(PPA)
Familial Frontotemporal Lobar Degeneration (fFTLD)
Amyotrophic Lateral Sclerosis(ALS)
Lewy Body Disease(LBD)
Progressive Supranuclear Palsy(PSP)
Corticobasal Syndrome(CBS)
Posterior Cortical Atrophy(PCA)
Alzheimer's Disease(AD)

Explore related trials

Alzheimer's DiseaseAmyotrophic Lateral SclerosisCorticobasal syndromeFrontotemporal degenerationLewy Body DementiaParkinson DiseasePosterior cortical atrophy syndromePrimary Progressive AphasiaProgressive Supranuclear Palsy

Where it's being run

1 sites across 1 states
Pennsylvania1

Study leadership

  • David Irwin, MD · PRINCIPAL_INVESTIGATOR · University of Pennsylvania

Who to contact

Emily Xie
[email protected]
215-746-2781
Email the study team

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Do you actually qualify for this trial?

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Eligibility criteria

Exclusion

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.

What this trial measures

  • Status of progression - changes in neuropsychological tests.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.

    The changes of neuropsychological tests (well known cognitive measures such as: Naming test, CVLT, MoCA, Oral Trails, etc.) in neurodegenerative diseases over time.