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| ID | Type | Description | Link |
|---|---|---|---|
| TCRD-I102-03 | Other Grant/Funding Number | TCRD-I102-03 |
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The purpose of the Parkinson's disease Registry (PDR) is to develop a nation-wide database of persons with Parkinson's disease (PD) in Taiwan.
Among degenerative neurological disease, PD is the second most common disorder. Although a wide range of incidence and prevalence rate exist in reviewed literatures due to a consequence of variation in study methodologies, the crude prevalence rate above 60 year-old is 1%. Increase in aging population will lead to an increase in PD patients. The PDR will be used to facilitate the understanding of basic epidemiological features of the disease, genetic and non-genetic risk factors, co-morbidity, the up-to-date treatment strategies and the related economic burden from medical and surgical treatment (deep brain stimulation), to develop new therapeutic protocols as well as healthcare policies, and ultimately, to improve the quality of life of PD patients. PDR will also be served as data bank for investigators in the field of PD to quickly identify and notify research subjects about other research studies for which they are eligible. Patient who registered can also sign their consent for a future brain donation after they passed away.
Methods:
The 4 main Tzu Chi Hospitals from Hualien, Da Lin, Taichung, and Taipei will serve as representative of pilot study for National registry. This will be a record-based, multi-center, nation-wide, cohort study. A user-friendly, yet, encrypted registration platform will be provided through internet for authorized personnel. The contents of PDR will be as follow: demographic features, risk factors, clinical profiles of diagnostic criteria, co-morbidity, images profiles, treatment regimens in details, prognosis, health-related quality of life, and neuropsychological assessment batteries.
Expected results:
Key words: Parkinson's disease, Registry, Epidemiology, Treatment, Prognosis
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| Measure | Description | Time Frame |
|---|---|---|
| Risk factors | risk factors include: pesticide, herbicide, drinking underground water, jobs with heavy metals exposure, tea drinking, coffee drinking, smoking, vegetarian | 1 year |
| Measure | Description | Time Frame |
|---|---|---|
| Motor function | Assessment with Unified Parkinson's Disease Rating Scale (UPDRS) part 3. Rating when l-dopa medication On and Off, to see the improvement %. | 1 year |
| Measure | Description | Time Frame |
|---|---|---|
| Cognitive function | Rating with Mini-mental status examination (MMSE) and Cognitive abilities screening instrument (CASI) | 1 year |
| Quality of life | Assessment with Parkinson disease questionnaire (PDQ-39), UPDRS part 2, and Schwab and England activity of daily living (SEADL) |
Inclusion Criteria:
Exclusion Criteria:
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Patients in community hospitals or medical centers
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Tingwen Hou | Contact | +886-3-8561825 | 2151 | tingwen.hou@msa.hinet.net |
| Name | Affiliation | Role |
|---|---|---|
| Shin-Yuan Chen, M.D. | Department of Neurosurgery, Hualien Tzu Chi Hospital | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Hualien Tzu Chi Hospital | Recruiting | Hualien City | 886 | Taiwan |
| Type | Date | Date Unknown |
|---|---|---|
| Release | Feb 5, 2017 | |
| Reset | Mar 24, 2017 | |
| Release | Mar 9, 2018 | |
| Reset | Nov 2, 2018 |
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| Release Date | Unrelease Date | Unrelease Date Unknown | Reset Date | MCP Release Number |
|---|---|---|---|---|
| Feb 5, 2017 | Mar 24, 2017 | |||
| Mar 9, 2018 |
| ID | Term |
|---|---|
| D010300 | Parkinson Disease |
| ID | Term |
|---|---|
| D020734 | Parkinsonian Disorders |
| D001480 | Basal Ganglia Diseases |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
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| 1 year |
| Depression | Assessment with Beck's depression inventory (BDI) and UPDRS part 1. | 1 year |
| Comorbidity | Hypertension, diabetes mellitus, stroke, cardiovascular disease, alcoholism, epilepsy, brain surgery, memory impairment, hallucination. | 1 year |
| Cost of medical treatment | Identify individual medications and represented as levo-dopar equivalent daily dose (LEDD) | 1 year |
| Initial PD symptoms | To identify the initial cardinal symptom: bradykinesia, tremor, rigidity and posture instability | 1 year |
| Nov 2, 2018 |
| D009422 | Nervous System Diseases |
| D009069 | Movement Disorders |
| D000080874 | Synucleinopathies |
| D019636 | Neurodegenerative Diseases |