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| ID | Type | Description | Link |
|---|---|---|---|
| NIA U19 | Other Identifier | NIA |
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| Name | Class |
|---|---|
| National Institute on Aging (NIA) | NIH |
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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.
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:
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.
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| neuropsychiatric and cognitive testing questionnaires | Behavioral | 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
|
| Measure | Description | Time Frame |
|---|---|---|
| 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 |
| Measure | Description | Time Frame |
|---|---|---|
| Identification and Diagnosis of Parkinson's disease | Improve our understanding of how best to identify, diagnose, and manage motor and non-motor symptoms of Parkinson's disease and related conditions | 5 years |
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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.
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Population will be derived from outpatient clinics, support groups, self-referral, and community members.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Eugenia Mamikonyan | Contact | 215-615-3085 | eugenia.mamikonyan@pennmedicine.upenn.edu |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of Pennsylvania | Recruiting | Philadelphia | Pennsylvania | 19104 | United States |
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.
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| ID | Term |
|---|---|
| D010300 | Parkinson Disease |
| ID | Term |
|---|---|
| D020734 | Parkinsonian Disorders |
| D001480 | Basal Ganglia Diseases |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
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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.
| D009422 | Nervous System Diseases |
| D009069 | Movement Disorders |
| D000080874 | Synucleinopathies |
| D019636 | Neurodegenerative Diseases |