University of Pennsylvania Centralized Observational Research Repository on Neurodegenerative Disease (UNICORN)
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.
Disease:
Amyotrophic Lateral Sclerosis (ALS), Familial ALS, Sporadic ALS, Healthy Volunteer, Healthy Volunteer with a Family History of ALSStudy Type:
Observational StudyStudy Category:
Study Status:
EnrollingPhase:
Not ApplicableStudy Chair(s)/Principal Investigator(s):
Murray Grossman, MD University of Pennsylvania
Clinicaltrials.gov ID (11 digit #):
NCT04715399Neals Affiliated?
NoCoordinating Center Contact Information
University of PennsylvaniaWei Xu / .(JavaScript must be enabled to view this email address) / 215-349-5863
Gabriela Bustamante, BSN, RN / .(JavaScript must be enabled to view this email address) / 215-662-3361
Philadelphia, Pennsylvania 19104 United States
Full Study Summary:
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.