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Parkinson's Disease Registry

NCT ID: NCT02051205

Last Updated: 2014-01-31

Study Results

Results pending

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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Recruitment Status

UNKNOWN

Total Enrollment

200 participants

Study Classification

OBSERVATIONAL

Study Start Date

2012-12-31

Study Completion Date

2014-12-31

Brief Summary

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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.

Detailed Description

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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:

1. To facilitate the understanding of demographic epidemiological features of PD.
2. To find the risk factors of PD and the possible intervention toward disease prevention in Taiwan.
3. To find the comorbidity of the disease, and the solution toward better treatment and related outcome.
4. Assess current treatment approaches and develop best-practice guidelines.
5. Tracking the health-related quality of life of PD patient as well as care-givers and the economic impact from different treatment regimens of best medications versus surgical interventions (neuromodulation / neuro-regeneration) from time to time.
6. Drive the development of innovative research projects.
7. Accelerate the process of informing patients of research projects for which they may be eligible.

Key words: Parkinson's disease, Registry, Epidemiology, Treatment, Prognosis

Conditions

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Parkinson Disease

Keywords

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Parkinson's disease, risk factors, epidemiology

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Eligibility Criteria

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Inclusion Criteria

* Clinical diagnosis of Parkinson's disease

Exclusion Criteria

* None
Minimum Eligible Age

20 Years

Maximum Eligible Age

80 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Buddhist Tzu Chi General Hospital

OTHER

Sponsor Role lead

Responsible Party

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Shin-Yuan Chen

Department of Neurosurgery

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Shin-Yuan Chen, M.D.

Role: PRINCIPAL_INVESTIGATOR

Department of Neurosurgery, Hualien Tzu Chi Hospital

Locations

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Hualien Tzu Chi Hospital

Hualien City, , Taiwan

Site Status RECRUITING

Countries

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Taiwan

Central Contacts

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Tingwen Hou

Role: CONTACT

Phone: +886-3-8561825

Email: [email protected]

Facility Contacts

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Shin-Yuan Chen, M.D.

Role: primary

Other Identifiers

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TCRD-I102-03

Identifier Type: OTHER_GRANT

Identifier Source: secondary_id

TCRD-I102-03

Identifier Type: -

Identifier Source: org_study_id