The National Registry Study For the Real-world Patients With Parkinsonian Disorders in China
NCT ID: NCT03649503
Last Updated: 2025-10-02
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
100000 participants
OBSERVATIONAL
2018-10-01
2033-09-30
Brief Summary
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Detailed Description
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The PaWei APP will include:
1. Information about the National Registry Study (who is eligible to participate, the goals of the project and other relevant information about investigators and sponsors involved in the Initiative).
2. Frequently Asked Questions (FAQs) such as "How will my information be used?", "How will patient information be safeguarded?", "What information will be requested?", "How much time will be required for registration and testing?" will be addressed for participants.
3. General information about Parkinsonian Disorders.
The National Registry Study will be a large, online database of volunteers who are interested in participating in this study. Anyone with Parkinsonian Disorders is welcome to join the Registry.
1. Participants will provide their email address or telephone number and create an account and username with the Registry.
2. The Registry will send an automatic email or short message to the participant to verify their email address or telephone number.
3. Participants will read the online Information Sheet and will be asked to provide their consent by clicking either "I consent" or "I decline." Participants who decline to participate in the Registry will be not included in our study.
4. Participants who give their consent will be permitted to continue through the registration process, which includes completing a battery of questionnaires designed to obtain a general understanding of participants health, medical history wellbeing.
5. In addition to questionnaires, participants will be able to complete online scales related to quality of life, and cognitive assessments.
6. Participants will be given the option to elect a Caregiver and/or Study Partner (CASP) to enrich their study profile.
7. Video recordings: Participants are asked to perform finger tapping, hand movements, and walking in MDS-UPDRS III test after being instructed by the video example, and then to upload the videos to the PaWei APP. The severity of motor dysfunctions on those videos can be judged by clinicians, and be potentially quantified in the future by AI technology under development.
8. Data validation: (1) The quality control of raw data is the initial step of data analysis for any successful research. In PaWei platform, the investigators take a strategy of assessing the data quality by identifying poor-quality data, like incomplete data and illogical data based on the logistic verification about consistency of relevant questions. (2) Automated feedback loops are employed with this strategy to enable real-time detection of incomplete data or illogical data, which can be used to improve data collection quality.
9. Participants may be referred to other research studies and/or clinical trials.
Conditions
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Study Design
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COHORT
PROSPECTIVE
Interventions
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No intervention
Eligibility Criteria
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Inclusion Criteria
ALL
Yes
Sponsors
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First Affiliated Hospital, Sun Yat-Sen University
OTHER
Tianjin Medical University General Hospital
OTHER
Peking Union Medical College Hospital
OTHER
Chinese PLA General Hospital
OTHER
Shanghai Zhongshan Hospital
OTHER
The First Affiliated Hospital of the Fourth Military Medical University
OTHER
Affiliated Hospital of North Sichuan Medical College
OTHER
The Affiliated Nanjing Drum Tower Hospital of Nanjing University Medical School
OTHER
Changshu Hospital of Traditional Chinese Medicine
OTHER
The Affiliated Hospital of Qingdao University
OTHER
Guangxi Ruikang Hospital
OTHER
Xi'an Central Hospital
OTHER
First Affiliated Hospital of Chongqing Medical University
OTHER
The First Hospital of Hebei Medical University
OTHER
Jieyang People's Hospital
OTHER
Luoyang Central Hospital
OTHER
Taian City Central Hospital
OTHER
Gansu Provincial Hospital
OTHER
First Affiliated Hospital of Harbin Medical University
OTHER
Daqing Oil Field Hospital
OTHER
Fujian Provincial Hospital
OTHER
The Affiliated Hospital of Xuzhou Medical University
OTHER
Taizhou Hospital
OTHER
Zhejiang Hospital
OTHER
The 101st Hospital of Chinese People's Liberation Army
OTHER
The First Affiliated Hospital of Zhengzhou University
OTHER
The First Affiliated Hospital of Dalian Medical University
OTHER
China-Japan Union Hospital, Jilin University
OTHER
Wuhan No.1 Hospital
OTHER
Shanghai Jiao Tong University Affiliated Sixth People's Hospital
OTHER
Northern Jiangsu People's Hospital
OTHER
Shanghai Tongji Hospital, Tongji University School of Medicine
OTHER
Shanghai 5th People's Hospital
OTHER
Third People's Hospital, Huzhou City, Zhejiang Province, China
OTHER
Suzhou Municipal Hospital
OTHER
Ningbo No. 1 Hospital
OTHER
The First People's Hospital of Changzhou
OTHER
Affiliated Hospital of Jiangsu University
OTHER
The Second Affiliated Hospital of Harbin Medical University
OTHER
The First Affiliated Hospital with Nanjing Medical University
OTHER
Fujian Medical University Union Hospital
OTHER
Shanghai Changzheng Hospital
OTHER
Second Affiliated Hospital of Nanchang University
OTHER
Jingjiang People's Hospital
OTHER
Qingdao Municipal Hospital
OTHER
Xi'an No.3 Hospital
OTHER_GOV
Lianyungang Hospital Affiliated Bengbu Medical College
OTHER
Jinzhou Medical University
OTHER
Shanghai 10th People's Hospital
OTHER
Huadong Hospital
OTHER
No. 102 Hospital of Chinese People's Liberation Army
OTHER
Shandong Provincial Hospital
OTHER_GOV
Anhui Provincial Hospital
OTHER_GOV
Affiliated Hospital of Guangdong Medical University
OTHER
Huashan Hospital
OTHER
Responsible Party
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Jian Wang
Professor & Deputy Director, Department of Neurology
Locations
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Huashan Hospital Affiliated to Fudan University
Shanghai, Shanghai Municipality, China
Huashan Hospital
Shanghai, Shanghai Municipality, China
Countries
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Central Contacts
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Facility Contacts
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Other Identifiers
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KY2016-214
Identifier Type: -
Identifier Source: org_study_id
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