UPenn Observational Research Repository on Neurodegenerative Disease

Last updated: January 7, 2025
Sponsor: University of Pennsylvania
Overall Status: Active - Recruiting

Phase

N/A

Condition

Parkinson's Disease

Communication Disorders

Lewy Body Dementia

Treatment

No intervention

Clinical Study ID

NCT04715399
842873
P01AG066597
R01AG054519
  • Ages > 18
  • All Genders
  • Accepts Healthy Volunteers

Study 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.

Eligibility Criteria

Inclusion

Inclusion Criteria:

This protocol will include 3 groups of people:

  1. People with a clinical diagnosis of a neurodegenerative disease. such asfrontotemporal degeneration(FTD), primary progressive aphasia(PPA), Lewy bodydisease(LBD), amyotrophic lateral sclerosis(ALS), progressive supranuclearpalsy(PSP), corticobasal syndrome(CBS), posterior cortical atrophy(PCA), Alzheimer'sdisease(AD), Parkinson's disease(PD)

  2. People with a family history of neurodegenerative disease who may or may not besymptomatic, and may or may not be mutation carriers such as familial frontotemporallobar degeneration (fFTLD) or familial ALS,

  3. People with no known neurological disease who will provide control data.

Exclusion

Exclusion Criteria:

  • 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'sparticipation, including but not limited to neurological, psychological and othermedical conditions (such as cardiac, neurosurgical, infectious conditions).

  • Individual participants may be excluded from some, but not all, study procedures forsafety reasons when they have a contraindication or at the discretion of theInvestigator. For example, persons with metal implants which are not MRI-safe willnot be able to take part in imaging, and those on blood thinning medications may notbe able to take part in lumbar puncture.

  • Pregnant women; if a woman becomes pregnant during the study, research activitiesthat may increase risk to the patient and the unborn fetus will be stopped until theend of pregnancy, at which point participation can be resumed.

Study Design

Total Participants: 1000
Treatment Group(s): 1
Primary Treatment: No intervention
Phase:
Study Start date:
May 29, 2020
Estimated Completion Date:
May 30, 2070

Study 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.

Connect with a study center

  • University of Pennsylvania

    Philadelphia, Pennsylvania 19104
    United States

    Active - Recruiting

Not the study for you?

Let us help you find the best match. Sign up as a volunteer and receive email notifications when clinical trials are posted in the medical category of interest to you.