RECRUITING

UPenn Observational Research Repository on Neurodegenerative Disease

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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)

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Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

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

Quick Facts

Study Start:2020-05-29
Study Completion:2070-05-30
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04715399

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:18 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. 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. 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. 3. People with no known neurological disease who will provide control data.
  1. * Anyone who is under the age of 18.
  2. * 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).
  3. * 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.
  4. * 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.

Contacts and Locations

Study Contact

Gillian Bradley
CONTACT
215 349-5725
gillian.bradley@pennmedicine.upenn.edu
Dahlia Kamel
CONTACT
kamel.dahlia@pennmedicine.upenn.edu

Principal Investigator

David Irwin, MD
PRINCIPAL_INVESTIGATOR
University of Pennsylvania

Study Locations (Sites)

University of Pennsylvania
Philadelphia, Pennsylvania, 19104
United States

Collaborators and Investigators

Sponsor: University of Pennsylvania

  • David Irwin, MD, PRINCIPAL_INVESTIGATOR, University of Pennsylvania

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2020-05-29
Study Completion Date2070-05-30

Study Record Updates

Study Start Date2020-05-29
Study Completion Date2070-05-30

Terms related to this study

Additional Relevant MeSH Terms

  • 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)