University of Pennsylvania Research Repository Collecting Data and Samples to Study Neurodegenerative Diseases

What this Trial Is About

Researchers at the University of Pennsylvania are studying neurodegenerative diseases by creating a large collection of data and samples. This includes people diagnosed with conditions like frontotemporal degeneration, primary progressive aphasia, amyotrophic lateral sclerosis, and Alzheimers disease, as well as individuals with a family history of these diseases and healthy adults. The goal is to better understand the causes and progression of these illnesses to support research and treatment development. The study collects various types of information including clinical data like demographics and motor assessments, cognitive and speech data, brain imaging results, and biological samples such as biofluids and genetic material. These data are gathered from participants at a single point in time cross-sectional and over a longer period longitudinal to observe changes. The collected information is made available to qualified researchers at the University and partner institutions. Participants will be followed from enrollment for up to 50 years or until they choose to withdraw or pass away. During this time, their cognitive abilities, language skills, social behaviors, biological markers, and brain imaging changes are regularly assessed. This ongoing monitoring helps track the natural progression of neurodegenerative diseases. The study includes healthy volunteers and people at risk or affected by these conditions, with no interventions administered as it is observational in nature.

UPenn Observational Research Repository on Neurodegenerative Disease