Parkinson's Disease and Movement Disorders Clinical Database
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: neuropsychiatric and cognitive testing questionnaires.
- Who it may be relevant to
- Registry conditions: Parkinson Disease, Parkinson Disease Dementia, Lewy Body Parkinson Disease, Lewy Body Dementia With Behavioral Disturbance. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Overview
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.
Detailed description
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 (PDMDC) and the Hospital of the University of Pennsylvania.
The purpose of the research database is to have a comprehensive source of data that can be used for educational, research and patient care projects at the PDMDC. These data may be used for any study examining the relationship between treatment and clinical symptoms of patients with PD and related disorders. The main uses of the data are to:
* Determine the long term effects of Parkinson's disease and related conditions, including predictors of its motor and non-motor symptoms * Identify genetic and other neurobiological factors related to the risk of developing Parkinson's disease and related disorders and their course * Improve our understanding of how best to identify, diagnose, and manage motor and non-motor symptoms of Parkinson's disease and related conditions Evaluate biological markers of disease or response to therapy * Identify patients who may be candidates for participation in trials of new medications. * Identify patients who may be interested in participating in educational or developmental activities
Participants are seen annually for the first 4 years, biennially thereafter. The participants continue in the study until study end, withdrawal, or death on study.
Interventions
- Behavioral neuropsychiatric and cognitive testing questionnaires
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
Primary outcome measures
- Long term effects of Parkinson's disease [Time frame: 5 years]
- Genetic and Neurobiological factors [Time frame: 5 years]
Secondary outcome measures (1)
- Identification and Diagnosis of Parkinson's disease [Time frame: 5 years]
Eligibility criteria
Inclusion criteria
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.
Exclusion criteria
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.
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Cohort
Study locations
United States · 1 center
- University of Pennsylvania — Philadelphia
Identifiers
NCT: NCT04997642 · 820710 · NIA U19