NCT04715399 · RECRUITING
UPenn Observational Research Repository on Neurodegenerative Disease
This is an observational study at the University of Pennsylvania — no drug or treatment involved. Researchers are building a long-term data repository by collecting cognitive tests, brain scans, and biological samples such as blood and spinal fluid from people with neurodegenerative diseases, people with a family history of these diseases, and healthy controls. The goal is to support future research. There is no experimental phase because nothing is being tested on participants.
Eligibility criteria
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.
The sponsor's own eligibility wording, lightly reformatted. The study team makes the final eligibility decision — worth discussing with your doctor.
Eligibility criteria as of 2026-01-22