Recruiting

Observational Study

Sponsor:

University of Pennsylvania

Code:

NCT07798700

Conditions

Frontotemporal Degeneration (FTD)

ALS (Amyotrophic Lateral Sclerosis)

Primary Progressive Aphasia (PPA)

Familial Frontotemporal Lobar Degeneration (fFTLD)

Fronto-temporal Lobar Dementia

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Accepted

Study Details

Brief summary:

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.

Conditions

Frontotemporal Degeneration (FTD)

ALS (Amyotrophic Lateral Sclerosis)

Primary Progressive Aphasia (PPA)

Familial Frontotemporal Lobar Degeneration (fFTLD)

Fronto-temporal Lobar Dementia

Study ID

NCT07798700

Start date

Dec 12, 2025

Status verified date

Aug, 2026

Completion date

Jan 1, 2070

Anticipated

Primary completion date

Jan 1, 2070

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Accepted

Inclusion Criteria:

1. 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
2. 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.
3. People with no known neurological disease who will provide control data.

Exclusion Criteria:

1. Anyone who is under the age of 18.
2. 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).

Study Design

Enrollment

1000 participants

Anticipated

Interventions and Outcome Measures

Arms

People with a clinical diagnosis of neurodegenerative disease

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 meeting criteria for group 1

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.

Healthy Controls

People with no known neurological disease who will provide control data.

Primary outcome measure

  • To contribute to and continue to sustain a repository biological samples and data 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. ]

Central Contacts and Locations

Locations

University of Pennsylvania

Recruiting

Philadelphia, Pennsylvania, United States, 19104

Contacts

Principal Investigator:

Corey McMillan, PhD

More Information

Sponsor

University of Pennsylvania

Last update posted

Sep 1, 2026

Last verified

Aug, 2026

Keywords

  • Dementia
  • ALS
  • FTD
  • Familial FTD
  • Familial ALS
  • Neurodegeneration
  • Neuromuscular Diseases
  • Movement Disorder
  • Neurodegenerative Diseases

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 2026-09-01.