The National Registry Study For the Real-world Patients With Parkinsonian Disorders in China
ConditionParkinsonian Disorders
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorHuashan Hospital
About this trial
The overall goal of this project is to identify, assess and longitudinally monitor subjects who are interested in participating in this study. Participants will enroll through a platform named PaWei, and provide informed consent prior to any study activities. PaWei will collect a variety of information, including participants' demographic information, overall health, family history of Parkinson's Disease, other clinical information (clinical drug use, drug efficacy, and comorbid disorders), mood status, sleep, diet, exercise, memory complaints, online cognitive tests, the Short-Form 8-Item Parkinson's Disease Questionnaire (PDQ-8), Movement Disorder Society-Unified Parkinson's Disease Rating Scale IB \& II (MDS-UPDRS IB \& II), Non-Motor Symptom Aassessment Scale for Parkinson's Disease (NMSS) , Hoehn and Yahr Scale, and other scales related to quality of life, etal---all through self-reported online questionnaires. Participants will also be asked to return to the PaWei every 3 months at regular intervals, to complete follow-up scales related to quality of life, and neuropsychological assessments, etal. Anyone with Parkinsonian Disorders is welcome to participate.
Eligibility criteria
This trial accepts healthy volunteersQualifiers
None
Disqualifiers
None
Trial population
The Registry is a large, online database of volunteers who would like to participate in the research. Anyone with Parkinsonian Disorders is welcome to join the Registry.
Trial design
Design model
Cohort
Time perspective
Prospective
Treatments tested in this trial
No intervention
Other intervention
Treatment groups
No treatment groups listed
Trial outcomes
Primary outcomes
1
Change from Baseline in the Short-Form 8-Item Parkinson's Disease Questionnaire (PDQ-8) Score
The short-form 8-item Parkinson's disease Questionnaire (PDQ-8) is the most commonly used scale measuring health related quality of life (HRQoL) in PD patients. It includes 8 items, and each item has five options (never, occasionally, sometimes, often, always or cannot do at all). The total scores range from 0 (good health) to 32 (poor health). The change of PDQ-8 score is defined as the score collected at visit 4 (end of year 1), visit 8 (end of year 2), visit 12 (end of year 3), visit 16 (end of year 4), visit 20 (end of year 5), visit 24 (end of year 6), visit 28 (end of year 7), visit 32 (end of year 8), visit 36 (end of year 9), visit 40 (end of year 10), and final visit (last study visit or early withdrawal visit, up to 10 years) minus baseline score. Analysis Method: Mixed Model Repeated Measures (MMRM)
Time frame
Baseline, year 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, and final visit (last study visit or early withdrawal visit, up to 10 years)Sponsors and contacts
Click on the lead sponsor to view all of their trials.
Huashan Hospital
Lead sponsor
First Affiliated Hospital, Sun Yat-Sen University
Collaborator
Tianjin Medical University General Hospital
Collaborator
Peking Union Medical College Hospital
Collaborator
Chinese PLA General Hospital
Collaborator
Shanghai Zhongshan Hospital
Collaborator
The First Affiliated Hospital of the Fourth Military Medical University
Collaborator
Affiliated Hospital of North Sichuan Medical College
Collaborator
The Affiliated Nanjing Drum Tower Hospital of Nanjing University Medical School
Collaborator
Changshu Hospital of Traditional Chinese Medicine
Collaborator
The Affiliated Hospital of Qingdao University
Collaborator
Guangxi Ruikang Hospital
Collaborator
Xi'an Central Hospital
Collaborator
First Affiliated Hospital of Chongqing Medical University
Collaborator
The First Hospital of Hebei Medical University
Collaborator
Jieyang People's Hospital
Collaborator
Luoyang Central Hospital
Collaborator
Taian City Central Hospital
Collaborator
Gansu Provincial Hospital
Collaborator
First Affiliated Hospital of Harbin Medical University
Collaborator
Daqing Oil Field Hospital
Collaborator
Fujian Provincial Hospital
Collaborator
The Affiliated Hospital of Xuzhou Medical University
Collaborator
Taizhou Hospital
Collaborator
Zhejiang Hospital
Collaborator
The 101st Hospital of Chinese People's Liberation Army
Collaborator
The First Affiliated Hospital of Zhengzhou University
Collaborator
The First Affiliated Hospital of Dalian Medical University
Collaborator
China-Japan Union Hospital, Jilin University
Collaborator
Wuhan No.1 Hospital
Collaborator
Shanghai Jiao Tong University Affiliated Sixth People's Hospital
Collaborator
Northern Jiangsu People's Hospital
Collaborator
Shanghai Tongji Hospital, Tongji University School of Medicine
Collaborator
Shanghai 5th People's Hospital
Collaborator
Third People's Hospital, Huzhou City, Zhejiang Province, China
Collaborator
Suzhou Municipal Hospital
Collaborator
Ningbo No. 1 Hospital
Collaborator
The First People's Hospital of Changzhou
Collaborator
Affiliated Hospital of Jiangsu University
Collaborator
The Second Affiliated Hospital of Harbin Medical University
Collaborator
The First Affiliated Hospital with Nanjing Medical University
Collaborator
Fujian Medical University Union Hospital
Collaborator
Shanghai Changzheng Hospital
Collaborator
Second Affiliated Hospital of Nanchang University
Collaborator
Jingjiang People's Hospital
Collaborator
Qingdao Municipal Hospital
Collaborator
Xi'an No.3 Hospital
Collaborator
Lianyungang Hospital Affiliated Bengbu Medical College
Collaborator
Jinzhou Medical University
Collaborator
Shanghai 10th People's Hospital
Collaborator
Huadong Hospital
Collaborator
No. 102 Hospital of Chinese People's Liberation Army
Collaborator
Shandong Provincial Hospital
Collaborator
Anhui Provincial Hospital
Collaborator
Affiliated Hospital of Guangdong Medical University
Collaborator
Source ClinicalTrials.gov