Study Purpose: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.
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)
Type of Intervention:
Study Chair(s)/Principal Investigator(s):
David Irwin, MD, University of Pennsylvania
Coordinating Center Contact Information
University of Pennsylvania
Philadelphia, Pennsylvania, 19104 United States
Full Study Summary:
University of Pennsylvania
Estimated Study Start Date:
05 / 29 / 2020
Estimated Study Completion Date:
05 / 30 / 2070
Posting Last Modified Date:
01 / 17 / 2023
Date Study Added to neals.org:
01 / 20 / 2021
Can participants use Riluzole?
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.
- 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.
University of Pennsylvania | Recruiting