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UPenn Observational Research Repository on Neurodegenerative Disease

University of Pennsylvania · with National Institutes of Health (NIH), United States Department of Defense · NCT04715399

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Opens the official ClinicalTrials.gov record, with the study team’s contacts. Bored Studies doesn’t enroll anyone.

Key facts

Compensation
Not posted. Ask the study team before screening.
Who can join
Ages 18+ · All sexes
Healthy volunteers
Accepted
Study type
Observational
Target enrollment
1000
US sites recruiting
1
Study start
May 29, 2020
Record last updated
January 22, 2026

Status re-checked against ClinicalTrials.gov within the last 12 hours.

What the study is about

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.

Being studied: No intervention

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)

Eligibility criteria

Copied from the official record. The study team makes the final decision at screening.

Show full criteria

Inclusion Criteria

This protocol will include 3 groups of people:

  • 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)
  • 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,
  • 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.

Recruiting US locations

  • University of Pennsylvania

    Philadelphia, PA 19104

    Site contact: Gillian Bradley · 215-349-5725 · gillian.bradley@pennmedicine.upenn.edu

Study contacts (from the official record)

  • Emily Xie · 215-746-2781 · emily.xie@pennmedicine.upenn.edu
  • Dahlia Kamel · kamel.dahlia@pennmedicine.upenn.edu
All neurology studies in Pennsylvania →
UPenn Observational Research Repository on Neurodegenerative Disease (NCT04715399) | Bored Studies