Today is:2020年05月27日 星期三
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Parkinson's Disease & Movement Disorders Multicenter Database and Collaborative Network in China(PD-MDCNC)v7.0 中国帕金森病及运动障碍疾病多中心数据库及协作网

CPDR

The Chinese Parkinson's Disease Registry(CPDR)

Background

Parkinson's disease (PD) is the second most common neurodegenerative disease after Alzheimer’s disease. The associated pathological changes are mainly characterized by progressive degeneration of dopaminergic neurons in the substantia nigra and the formation of Lewy bodies. The clinical manifestations mainly consist of motor symptoms such as bradykinesia, rigidity, static tremor, and postural balance disturbance, and non-motor symptoms such as olfactory loss, constipation, sleep disorder, depression, and so on. About 10% of PD patients exhibit familial aggregation, and the rest are sporadic cases. Epidemiological investigations at home and abroad indicate that the incidence of PD increases with age. The prevalence of PD in individuals over 65 years old is about 1.7%. In individuals over 80 years old, the prevalence of PD is as high as 4%. At present, there are about 2.5 million patients with PD in China. With the aging population, it is estimated that, by 2030, there will be about 5 million patients with PD in our country.

The Chinese Parkinson's Disease Registry (CPDR) is a multicenter, nationwide PD cohort study initiated by Xiangya Hospital,Central South University (the clinicaltrials.govidentifier is NCT03887663). The CPDR will provide authorized persons with an online, user-friendly, encrypted registration platform. The contents of the CPDRinclude demographic characteristics, clinical features, environmental factors, family history, comorbid phenomena, and findings of brain imaging, genomics, treatment, assessments of neuropsychology, and quality of life. The CPDR focuses on the clinical features, comorbid phenomena, natural history, and prognosis of PD in China.

Xiangya Hospital was founded in 1906, and is a Class-A, Grade-3 (top level in China) hospital under the direct control of the National Health Commission. It is affiliated to Central South University which is under the direct control of the Ministry of Education. Xiangya Hospital is an important center of clinical diagnosis and treatment, medical education, and scientific and technological innovation. In the early 20th century, Yale alumni created the Yale-China Association. In 1906, American medical doctor Edward H. Hume (1876-1957) was appointed to China by the Yale-China Association and founded Yale Hospital in Xipailou Street, Changsha. In 1914, entrusted by the Hunan provincial government, the Yuqun Society collaborated with the Yale-China Association to set up Xiangya Medical Schoolthe first higher medical education institution that was cofounded by China and the United States. Yale Hospital was renamed “Xiangya Hospital.”“Xiang” is the abbreviation of Hunan Province and “ya” is a transliteration of Yale.

The Subspecialty of Neurodegeneration and Genetic Diseases, Department of Neurology, Xiangya Hospital, Central South University, is mainly engaged in clinical and basic research of neurodegeneration and genetic diseases such as PD, Alzheimer's disease (AD), Essential tremor (ET), Motor neuron disease (MND), Spinocerebellar ataxia (SCA), Charcot-Marie-Tooth (CMT) disease, Hereditary spastic paraplegia (SPG), Neuronal intranuclear inclusion disease (NIID), and Huntington's disease (HD). Academic leaders and PI: Prof. Beisha Tang, Prof. Zhuohua Zhang, Prof. Xinxiang Yan, Prof. Lu Shen, Prof. Hong Jiang, Prof. Zhiquan Yang, Prof. Weihua Liao, Prof. Shuo Hu, Associate Prof. Jifeng Guo, Associate Prof. Junling Wang, Prof. Kai Yuan, Prof. Jian Qiu, Prof. Zhonghua Hu, Prof. Jinchen Li, etc.

Research plan
Establishment of a multicenter PD cohort in China (more than...

According to the Diagnostic Criteria of Chinese Parkinson's Disease (2016 Edition), following informed consent, more than 3,000 patients with clinically established or clinically probablePD were selected. We will collect demographic information, including name, gender, age, height, weight, and education level, and clinical information, including present illness, clinical history, family history, and treatment. A comprehensive medical and neurological assessment will be completed using standardized questionnaires, including the Unified Parkinson's Disease Rating Scale (UPDRS), the Hoehn and Yahr scale (H&Y), the Non-Motor Symptoms Scale (NMSS),  the Scale for Outcomes in Parkinson's Disease-Autonomic Dysfunction (SCOPA-AUT), the Rome III criteria for functional constipation, the 39-item Parkinson's Disease Questionnaire (PDQ-39), the Parkinson Disease Sleep Scale (PDSS), the Epworth Sleepiness Scale (ESS), the RBD Questionnaire-Hong Kong (RBDQ-HK), the Cambridge-Hopkins diagnostic questionnaire for RLS (CH-RLSq), the Mini-Mental State Examination (MMSE),the Hyposmia Rating Scale (HRS), the Hamilton Rating Scale for Depression (HAMD), the Parkinson Fatigue Scale (PFS), the 9-Item Wearing-Off Questionnaire (WOQ-9), and the New Freezing of Gait Questionnaire (NFOG-Q). We will conduct examinationsusingmagnetic resonance imaging and whole genome or whole exome sequencing, following up allparticipants for ten years

Carrying out research on the clinical features and comorbidi...

Based on the above work, baseline data collection and analysis of the multicenter PD cohort in China (more than 3,000 cases) were completed to explore the clinical characteristics and comorbid phenomena of PD in China.

Carrying out research on the natural history of PD in China

Adoptinga multicenter, longitudinal research method, we will follow-up 3,000 patients with PD for 10 years to explore the natural history of PD.

Administrator: Jifeng Guo Email:pd_mdcnc@163.com。

We sincerely invite all colleagues to join PD-MDCNC health cohort study and achieve collaboration, innovation, co-construction and sharing by multicenter cooperation.