ALS (Amyotrophic Lateral Sclerosis), Alzheimer's Disease (AD), Cortical Basal Syndrome (CBS), Dementia With Lewy Bodies (DLB), Familial Frontotemporal Lobar Degeneration (fFTLD), Frontotemporal Degeneration (FTD), Fronto-temporal Lobar Dementia, Limbic-predominant Age-related TDP-43 Encephalopathy (LATE), Parkinson's Disease Dementia (PDD), Parkinson's Disease (PD), Posterior Cortical Atrophy (PCA), Primary Lateral Sclerosis (PLS), Primary Muscular Atrophy (PMA), Primary Progressive Aphasia (PPA), Progressive Supranuclear Palsy(PSP)
Conditions
Keywords
Dementia, ALS, FTD, Familial FTD, Familial ALS, Neurodegeneration, Neuromuscular Diseases, Movement Disorder, Neurodegenerative Diseases
Brief summary
The aim of this study is to contribute to and continue to sustain a repository of blood samples, nucleic acid (DNA and/or RNA) samples, family history information, and other demographic information from individuals with age-related neurodegenerative conditions, or their family members who may or may not be at risk for similar conditions. This study will continue to further expand research into the molecular and genetic basis of these diseases and their risk factors.
Interventions
None listed
Sponsors
University of Pennsylvania
University of Pennsylvania Institute on Aging
National Institute on Aging (NIA)
National Institute of Neurological Disorders and Stroke (NINDS)
Study design
Observational model
COHORT
Time perspective
OTHER
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
1. People with a clinical diagnosis of a neurodegenerative disease including, but not limited to Alzheimer's disease (AD), Parkinson's disease (PD), Parkinson's disease dementia (PDD), dementia with Lewy bodies (DLB), frontotemporal dementia (FTD), amyotrophic lateral sclerosis (ALS), progressive supranuclear palsy (PSP), primary progressive aphasia (PPA), limbic-predominant age-related TDP-43 encephalopathy (LATE), corticobasal syndrome (CBS), posterior cortical atrophy (PCA), primary lateral sclerosis (PLS), primary muscular atrophy (PMA), or individuals with a suspected neurodegenerative dementia and/or movement disorder of unknown etiology will be considered for enrollment 2. Family Members of individuals who meet the criteria of group 1, who are people who may or may not be at risk for a similar neurodegenerative disease, who may or may not be symptomatic, and who may or may not have known or unknown genetic risk. 3. People with no known neurological disease who will provide control data.
Exclusion criteria
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).
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| To contribute to and continue to sustain a repository biological samples and data from individuals with age-related neurodegenerative conditions. | This is a natural history study-participants are followed from date of enrollment until death, withdraw, or funding is no longer available, or until 600 months have passed. | To contribute to and continue to sustain a repository of blood samples, nucleic acid (DNA and/or RNA) samples, family history information, and other demographic information from individuals with age-related neurodegenerative conditions. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| To collect and bank data and biospecimen samples | This is a natural history study-participants are followed from date of enrollment until death, withdraw, or funding is no longer available, or until 600 months have passed. | To collect and bank data and biospecimen samples locally and at collaborating data and biobank repositories in support of neurodegenerative disease research. Data and biospecimen samples may be collected as part of an external protocol (e.g., a different Penn IRB-approved observational protocol, clinical trial, or consortium study) in which participants may be co-enrolled |
| To collect data and biospecimen samples from people who wish to participate in research but are unable to participate or do not meet eligibility criteria for other research protocols at our lab. | This is a natural history study-participants are followed from date of enrollment until death, withdraw, or funding is no longer available, or until 600 months have passed. | To collect data and biospecimen samples from people who wish to participate in research but are unable to participate or do not meet eligibility criteria for other research protocols at our lab, e.g., a carrier of a rare genetic variant associated with a neurodegenerative disease. |
| To extend analysis, maintenance, and sharing of existing data. | This is a natural history study-participants are followed from date of enrollment until death, withdraw, or funding is no longer available, or until 600 months have passed. | To extend analysis, maintenance, and sharing of existing data, imaging, and biospecimen samples collected by our lab under previous research protocols |
Countries
United States
Contacts
CONTACTCara Joyce, MPH
CONTACTEmily Xie
PRINCIPAL_INVESTIGATORCorey McMillan, PhD
University of Pennsylvania
Outcome results
None listed