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UPenn Observational Research Repository on Neurodegenerative Disease

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

Who can join

As published by the study on ClinicalTrials.gov. "Not stated" means the study hasn't said — ask the study team.

Age
18 Years and older
Sex
All sexes
Healthy volunteers
Accepted
Compensation
Not stated

Other requirements are listed under Eligibility below. Only the study team can confirm whether you can join.

What to expect

No one can promise a trial will help you personally — that is what the research is trying to find out.

What participation involves

Not stated in the study description — ask the study team about visits and procedures.

Compensation
Not stated
  • Study-related exams and procedures are typically provided at no cost. This is how many trials work in general — confirm the details for this study with the study team.
  • Participants are monitored closely by the research team throughout the study.
  • Some participants may receive access to an investigational treatment, which is still being studied.
  • Your participation helps researchers learn whether this approach could help future patients.

About this study

In plain language

This study collects information and body fluid samples to support research and treatment for diseases that damage the brain and nerves over time. It gathers thinking and language test results, brain images, and samples at one time or over time. It includes people with these diseases, people with a family history, and people with no known brain or nerve disease.

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.

Compensation is read from the study's own description and may be missing — always confirm with the study team.

Eligibility

Who can join

  • Adults age 18 or older who fit one of the three groups below.
  • People diagnosed with a disease that damages the brain and nerves over time, such as Alzheimer's disease, Parkinson's disease, ALS, or frontotemporal degeneration.
  • People with a family history of these diseases, whether or not they have symptoms or carry a related gene change.
  • People with no known brain or nerve disease, whose results will be used for comparison.

Who can't join

  • People younger than 18.
  • People with a health condition or situation that the study doctor thinks could affect the results or make taking part too difficult.
  • Some people may be unable to have certain tests for safety reasons but may still join other parts of the study. For example, unsafe metal implants prevent MRI scans, and blood thinners may prevent a spinal tap, a test that collects fluid from the lower back.
  • People who are pregnant. If someone becomes pregnant during the study, research activities that may pose a risk will stop until the pregnancy ends, when participation may resume.

Simplified for readability. The official criteria below are what the study team uses.

Official eligibility criteria

Inclusion Criteria: This protocol will include 3 groups of people: 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. 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's participation, including but not limited to neurological, psychological and other medical conditions (such as cardiac, neurosurgical, infectious conditions). * 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. * 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.

Study sites (1)

PA