UPenn Observational Research Repository on Neurodegenerative Disease

Launched by UNIVERSITY OF PENNSYLVANIA · Jan 16, 2021

Keywords

ClinConnect Summary

The UPenn Observational Research Repository on Neurodegenerative Disease is a study aimed at gathering important information to help researchers understand and treat various neurodegenerative diseases, which are conditions that affect the brain and nervous system. This includes diseases like Alzheimer's, frontotemporal degeneration, and amyotrophic lateral sclerosis (ALS), among others. The study will collect different types of data, such as brain scans, biological samples, and information about thinking and language abilities, from participants over time.

To be eligible for this study, participants can fall into one of three groups: those who have been diagnosed with a neurodegenerative disease, those who have a family history of such diseases (even if they are not showing symptoms), and healthy individuals who will provide comparison data. Participants will be asked to undergo various assessments, but there are some exclusions, such as individuals under 18 or those with certain medical conditions that might interfere with the study. This research is currently open for recruitment, and anyone interested in participating should discuss it with their healthcare provider.

Gender

ALL

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.