Parkinson's Disease and Movement Disorders Clinical Database
2 other identifiers
observational
250
1 country
1
Brief Summary
The research database contains demographic and family history information, longitudinal information on the clinical symptoms, neuropsychological profile and treatments, stored biological samples, and brain images of patients with Parkinson's disease and related disorders receiving care at the Parkinson's disease and Movement Disorders Center and the Hospital of the University of Pennsylvania.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Sep 2019
Longer than P75 for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
September 30, 2019
CompletedFirst Submitted
Initial submission to the registry
August 1, 2021
CompletedFirst Posted
Study publicly available on registry
August 9, 2021
CompletedPrimary Completion
Last participant's last visit for primary outcome
September 15, 2029
ExpectedStudy Completion
Last participant's last visit for all outcomes
September 15, 2029
October 7, 2025
October 1, 2025
10 years
August 1, 2021
October 1, 2025
Conditions
Outcome Measures
Primary Outcomes (2)
Long term effects of Parkinson's disease
Determine the long term effects of Parkinson's disease and related conditions, including predictors of its motor and non-motor symptoms
5 years
Genetic and Neurobiological factors
Identify genetic and other neurobiological factors related to the risk of developing Parkinson's disease and related disorders and their course
5 years
Secondary Outcomes (1)
Identification and Diagnosis of Parkinson's disease
5 years
Interventions
Demographic data such as race, sex, age Family History Risk Factor Questionnaire Hoehn and Yahr Stage UPDRS Parkinson's symptom checklist Medication list Neuropsychological Test Battery Behavioral Exams * Geriatric Depression Scale Quality of Life Questionnaire * PDQ-39, SF-12
Eligibility Criteria
Population will be derived from outpatient clinics, support groups, self-referral, and community members.
You may qualify if:
- Any person who receives medical care for the diagnosis of Parkinson's disease with mild cognitive impairment (MCI) or dementia may be eligible to participate in the research database. There are no limitations for database participation based on age, disease severity or presence of cognitive impairments, as long as the person is able to complete the research assessments.
You may not qualify if:
- Absence of Parkinson's disease diagnosis. There are no limitations for database participation based on age, disease severity or presence of cognitive impairments, as long as the person is able to complete the research assessments.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- University of Pennsylvanialead
- National Institute on Aging (NIA)collaborator
Study Sites (1)
University of Pennsylvania
Philadelphia, Pennsylvania, 19104, United States
Biospecimen
Plasma and cerebrospinal fluid obtained with patient\'s consent. Biological samples including blood and spinal fluid may be collected from each database participant. Each participant will be given the option of allowing the collection of none, some, or both of the biological samples. Samples will be stored in a secure facility at the University of Pennsylvania Department of Pathology and Laboratory Medicine. If the subject consents, approximately 20 ml (4 teaspoons) of blood will be collected, and 25 ml (2 tablespoons) of spinal fluid will be collected.
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- OTHER
- Target Duration
- 15 Years
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- Professor of Psychiatry and Neurology
Study Record Dates
First Submitted
August 1, 2021
First Posted
August 9, 2021
Study Start
September 30, 2019
Primary Completion (Estimated)
September 15, 2029
Study Completion (Estimated)
September 15, 2029
Last Updated
October 7, 2025
Record last verified: 2025-10
Data Sharing
- IPD Sharing
- Will share
- Shared Documents
- STUDY PROTOCOL, ICF
The data in the research database are available to researchers both within the PDMDC and other researchers at the University and at other Institutions. Any release of data outside the PDMDC will be reviewed by the Principal Investigator and the Director of the PDMDC to ensure that the study is scientifically sound, that the research projects are covered by the subject's informed consent, and are compliant with HIPAA regulations. Once the study has been approved, a de-identified data extract is prepared and the data necessary to conduct the study are extracted from the database.