NCT04715399

UPenn Observational Research Repository on Neurodegenerative Disease

University of Pennsylvania Centralized Observational Research Repository on Neurodegenerative Disease (UNICORN)

• Status: Recruiting
• Phase: —
• Study type: Observational
• Enrollment: 1,000 (estimated)
• Sponsor: University of Pennsylvania · Academic / Other
• Sex: All
• Age: 18 Years
• Healthy volunteers: Accepted

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 research and treatment.

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 factors which may contribute to these illnesses. Investigators seek to better understand the basis of neurodegenerative conditions by creating a multimodal repository, including: clinical data such as demographic characteristics, vital signs and motor scales; cognitive and speech data; neuroimaging data; and biological specimens with associated biofluid biomarkers and genetic data. Investigators pursue acquiring these data from neurodegenerative disease patients, people at risk for neurodegenerative disease due to a family history, and unaffected adults. 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. This study aims to collect clinical and cognitive data, imaging data, and biospecimen samples from people whose background can inform research and treatment for neurodegenerative diseases, and make these samples and data available to qualified researchers at the University of Pennsylvania and collaborating academic centers and industry partners.

Conditions

• 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)

Interventions

Type	Name	Description
OTHER	No intervention	No intervention

Timeline

• Start date: 2020-05-29
• Primary completion: 2070-05-30
• Completion: 2070-05-30
• First posted: 2021-01-20
• Last updated: 2026-01-22

Locations

1 site across 1 country: United States