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RecruitingFrontotemporal Degeneration(FTD)Primary Progressive Aphasia(PPA)Familial Frontotemporal Lobar Degeneration (fFTLD)

UPenn Observational Research Repository on Neurodegenerative Disease

Eligible age

18+ yrs

Accepts

All genders

Locations

1 state

Healthy volunteers

Yes

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About this study

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.

Sponsor: University of Pennsylvania

You may qualify if…

  • ✓ 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.

You may not qualify if…

  • ✕ 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.

Where it's recruiting

Pennsylvania

Philadelphia

Source: ClinicalTrials.gov · NCT04715399 · last updated 2026-01-22