Parkinson's Disease and Movement Disorders Clinical Database
Ориентир для пациента и семьи
Простыми словами
Автоматическая сводка по структурированным данным реестра. Она помогает сориентироваться, но не заменяет официальный протокол или оценку врача.
- Что изучают
- В протоколе указаны: neuropsychiatric and cognitive testing questionnaires.
- Кому может быть актуально
- Состояния в реестре: Parkinson Disease, Parkinson Disease Dementia, Lewy Body Parkinson Disease, Lewy Body Dementia With Behavioral Disturbance. Базовые параметры: от 18 лет · Все.
- Что важно проверить
- Возраст, диагноз и пол — только базовые ориентиры. Предыдущее лечение, анализы и другие обязательные условия указаны ниже в критериях участия.
- Где проводится
- США
- Следующий шаг
- Сохраните исследование, покажите его лечащему врачу и уточните актуальный статус у исследовательского центра. Расходы, документы и поездка →
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Обзор
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.
Подробное описание
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.
Вмешательства
- Поведенческое 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
Первичные конечные точки
- Long term effects of Parkinson's disease [Срок оценки: 5 years]
- Genetic and Neurobiological factors [Срок оценки: 5 years]
Вторичные конечные точки (1)
- Identification and Diagnosis of Parkinson's disease [Срок оценки: 5 years]
Критерии участия
Критерии включения
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.
Критерии исключения
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.
Критерии приведены из реестра в оригинале (на английском). Окончательную оценку соответствия проводит исследовательский центр.
Здоровые добровольцы: Нет
Дизайн исследования
- Модель наблюдения
- Когортное
Центры проведения
США · 1 центр
- University of Pennsylvania — Philadelphia
Идентификаторы
NCT: NCT04997642 · 820710 · NIA U19