Chinese PD Registry
关键词
抽象
描述
Parkinson's disease (PD) is the second most common disorder among degenerative neurological diseases. PD is a complicated disease which consists of different subtypes. A certain type of parkinsonism has its unique clinical feature and genetic basis. Standards of classification and prognosis in different PD subtypes are still poorly understood. Investigators aim to establish a database of longitudinal recruited PD cohort ,and characterize the clinical feature, genetic basis, environmental factors and their interactions among different PD subtypes in China, identify natural history of a highly-presentative Chinese PD cohort and to discern major milestones in the disease process which indicates disease progression.
Data were collected at baseline, 12±1 months during the routine follow-up visits. Information about detailed disease history, level of education, significant chronic comorbidities, physical examination, medication history, family history, living habits and toxic exposure history, which include smoking, drinking tea, alcoholic consumption, drinking coffee, exposure to pesticide or occupational solvent, history of carbon monoxide poisoning and recurrent head trauma will be recorded at baseline. For each evaluation, the same questionnaires will be conducted. A standardized neurological assessment according to the recommendation of Consensus on the construction of clinical database of Parkinson's disease and movement disorders in China. The Unified Parkinson's Disease Rating Scale (UPDRS) part III is conducted for motor assessment, all the patients are evaluated in "OFF" state. The clinical stage of PD is assessed by Hoehn and Yahr scale (H-Y). The non-motor symptoms are evaluated by Non-motor Symptom Scale (NMSS), autonomic symptoms are evaluated by The Scale for outcomes in Parkinson disease for Autonomic Symptoms (SCOPA-AUT). Constipation was diagnosed by Functional Constipation Diagnostic Criteria Rome Ⅲ. The 39-item Parkinson's Disease Qestionnaire (PDQ-39) was used to assess the quality of life. Sleep quality was evaluated by Parkinson's Disease Sleep Scale (PDSS) and excessive daytime sleepiness by Epworth Sleepiness Scale (ESS). Probable rapid eye movement sleep behavior disorder (p-RBD) was diagnosed by rapid eye movement sleep behavior questionnaire-Hongkong (RBDQ-HK). Restless leg syndrome (RLS) was diagnosed with the Cambridge Hopkins Restless Leg syndrome questionnaire (CH-RLSq). Cognitive assessment was used the previously validated scale, Mini Mental State Examination (MMSE). Olfaction test was carried out by Hyposmia Rating Scale (HRS), a proportion of patients was also ascertained by Sniffin's Sticks. Depression was diagnosed by Hamilton Depression Scale (HAMD). Symptom of fatigue was measured by PD fatigue severity scale (PFS). Wearing-off was evaluated by WOQ-9 and freezing gait by new freezing gait questionnaire scores (NFOGQ). Dyskinesis was evaluated by Rush Dyskinesia Rating Scale. DNA samples extracted from peripheral blood and all the PD patients will be examed by Whole Exome Sequencing or Whole-genome sequencing. All the participants are scanned by structural MRI to exclude obvious intracranial lesions and other parkinsonism such as MSA, PSP and WD.
日期
最后验证: | 11/30/2019 |
首次提交: | 12/01/2018 |
提交的预估入学人数: | 03/20/2019 |
首次发布: | 03/24/2019 |
上次提交的更新: | 12/11/2019 |
最近更新发布: | 12/12/2019 |
实际学习开始日期: | 01/31/2017 |
预计主要完成日期: | 01/31/2027 |
预计完成日期: | 01/31/2027 |
状况或疾病
相
资格标准
有资格学习的性别 | All |
取样方式 | Probability Sample |
接受健康志愿者 | 没有 |
标准 | Inclusion Criteria: - Patients diagnosed with PD by UK Brain Bank Diagnostic Criteria and other standard criteria. Exclusion Criteria: - Lack of capacity to consent to participate in the project |
结果
主要结果指标
1. The Unified Parkinson's Disease Rating Scale for evaluating motor subtypes [12±1 months]
2. The clinical stage of PD is assessed by Hoehn and Yahr scale [12±1 months]
3. Autonomic symptoms are evaluated by The Scale for outcomes in Parkinson disease for Autonomic Symptoms [12±1 months]
4. The non-motor symptoms are evaluated by Non-motor Symptom Scale [12±1 months]
5. Constipation was diagnosed by Functional Constipation Diagnostic Criteria Rome III. [12±1 months]
6. The PDQ-39 was used to assess the quality of life. [12±1 months]
7. Sleep quality is evaluated by Parkinson's Disease Sleep Scale [12±1 months]
8. Excessive sleepiness is evaluated by Epworth Sleepiness Scale [12±1 months]
9. Probable rapid eye movement sleep behavior disorder was diagnosed by Probable rapid eye movement sleep behavior disorder Questionnaire -Hongkong [12±1 months]
10. Restless leg syndrome (RLS) was diagnosed with the Cambridge Hopkins Restless Leg syndrome questionnaire [12±1 months]
11. Cognitive condition is assessed by Mini Mental State Examination [12±1 months]
12. Olfaction test was measured by Hyposmia Rating Scale [12±1 months]
13. Depression was diagnosed by Hamilton and Montgomery-Asberg Depression Scale [12±1 months]
14. Symptom of fatigue was measured by PD fatigue severity scale [12±1 months]
15. freezing gait by new freezing gait questionnaire scores [12±1 months]
16. Dyskinesia was evaluated by UPDRS part III [12±1 months]
次要成果指标
1. hypertension [baseline]
2. Type II diabetes [baseline]
3. Hyperlipidemia [baseline]