Summary: 

Investigators at University of Pennsylvania are creating a repository, including: demographic characteristics, vital signs and motor scales; cognitive and speech data; neuroimaging data; and biological specimens with associated biofluid biomarkers and genetic data in order to better understand the basis of neurodegenerative conditions. Targeted conditions include frontotemporal degeneration (FTD), primary progressive aphasia PPA), amyotrophic lateral sclerosis (ALS), progressive supranuclear palsy (PSP), corticobasal syndrome (CBS), familial frontotemporal lobar degeneration (fFTLD), non-amnestic variants of Alzheimer's disease including logopenic progressive aphasia and posterior cortical atrophy, and Lewy body disease.

Who is eligible?

This study is open to individuals age 18 and older in the following groups:

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.

What will happen during the study?

Potential participants will meet with a study coordinator via zoom to review the study procedures and informed consent.  Once consented, participants will have yearly study visits in person at University of Pennsylvania.  During the yearly study visit participants may have:

• a lumbar puncture, 
• MRI, 
• blood draw, 
• neurological examination, 
• cognitive testing,
• family and medical history collection, and 
• complete additional questionnaires. 

There is no experimental treatment as part of this study.

What are they measuring?

• changes in neuropsychological tests.
• changes in language processing
• changes in speech and language processing
• changes in social disinhibition
• changes in biofluids and biomarkers
• changes in imaging

How long will participants be involved?

Participation will last up to patient withdrawal, death or lack of study funding.