Creating a repository for neurodegenerative disease data

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This study aims to establish a comprehensive repository of data related to neurodegenerative diseases, including cognitive, linguistic, imaging, and biological specimens. The University of Pennsylvania is leading this observational research to gather both cross-sectional and longitudinal data from individuals diagnosed with various neurodegenerative conditions, those at risk due to family history, and healthy controls. The collected data will include clinical characteristics, cognitive assessments, neuroimaging results, and biological samples, which will be made available for further research and treatment development. The goal is to enhance understanding of these diseases and support future studies.

Why it matters

Who can join: the full rules

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.

Where it's running

• University of Pennsylvania
  Philadelphia, Pennsylvania, United States Recruiting

Study contacts

• Principal investigator: David Irwin, MD — University of Pennsylvania
• Study coordinator: Emily Xie
• Email: emily.xie@pennmedicine.upenn.edu
• Phone: 215-746-2781

Similar studies

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.