Status:

RECRUITING

UPenn Observational Research Repository on Neurodegenerative Disease

Lead Sponsor:

University of Pennsylvania

Collaborating Sponsors:

National Institutes of Health (NIH)

United States Department of Defense

Conditions:

Frontotemporal Degeneration(FTD)

Primary Progressive Aphasia(PPA)

Eligibility:

All Genders

18+ years

Brief Summary

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...

Detailed Description

The Principal Investigator (PI) at the University of Pennsylvania seeks to better understand neurodegenerative diseases and is continually expanding research efforts and collaborations regarding the f...

Eligibility Criteria

Inclusion

  • 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

  • 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.

Key Trial Info

Start Date :

May 29 2020

Trial Type :

OBSERVATIONAL

Allocation :

ESTIMATED

End Date :

May 30 2070

Estimated Enrollment :

1000 Patients enrolled

Trial Details

Trial ID

NCT04715399

Start Date

May 29 2020

End Date

May 30 2070

Last Update

January 9 2025

Active Locations (1)

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University of Pennsylvania

Philadelphia, Pennsylvania, United States, 19104