UPenn Observational Research Repository on Neurodegenerative Disease
University of Pennsylvania · with National Institutes of Health (NIH), United States Department of Defense · NCT04715399
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
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