Australian Parkinson’s Disease Registry

Brief
description

The Australian Parkinson’s Disease
Registry (APDR) is a collaborative endeavour set up by researchers across
Victoria, Western Australia and New South Wales, and is managed by the
Cooperative Research Centre (CRC) for Mental Health. The registry consists of
two distinct cohorts: a cohort of volunteers with Parkinson’s disease (N = 314)
and a cohort of volunteers with no signs of Parkinson’s disease (N = 103), both
of whom have provided blood and biological samples for use as a research
platform for Australian and international researchers. Additionally, the participants with
Parkinson’s disease have been phenotyped using the Unified Parkinson’s Disease
Rating Scale (UPDRS) and other clinical scales, while a brief family history of
Parkinson’s disease is available for healthy controls.

Full
descriptionThe Australian Parkinson's Disease Registry holds
longitudinal data in the form of clinical phenotyping using clinical scales,
blood and biospecimen results.

This biobank includes data from three sites for 400
participants, aged over 18, who contributed blood and other biological samples,
clinical questionnaires (e.g. neuropsychological assessments) and other
clinical information.

Data contained in the collection includes the
following:

Phenotyping of subjects with Parkinson's
Disease according to clinical scales
Demographics, diagnosis, family history of
Parkinson's disease (n=400)
Biological samples (N = 400+): aliquots of
plasma (EDTA-treated or heparinized), serum (EDTA-treated or heparinised),
platelets, red blood cells, white blood cells, platelets, DNA, RNA and
CSF
Blood results (N = 400+): results of processing
of samples of plasma, serum, DNA, RNA, white blood cells, red blood cells,
whole blood and CSF
Notes

This data is currently within the Mediaflux Digital Asset Management
System operated by Research Platform Services, University of Melbourne.

The CRC for Mental Health has established large cohorts and uses advanced
technological capabilities such as genomics, proteomics, lipidomics and metallomics
to identify biomarkers for research into Alzheimer’s disease, Parkinson’s
disease, schizophrenia and mood disorders. These biobanks provide an important
resource to discover biomarkers in real populations, and ensure our
research discoveries are integrated into medical and health care practice. The CRC for Mental Health has collaborated
with the Florey Institute to create and manage the Australian Parkinson’s
Disease Registry.

The Florey Institute will become the custodian for the Australian
Parkinson’s Disease Registry after 30-06-2018 when the CRC's funding term
expires.

Significance statement

The Australian Parkinson's Disease Registry data
and samples will be used in future investigations to discover and validate
biomarkers for diagnosis and for monitoring the effects of therapies for
Parkinson’s disease and other forms of neurodegenerative disease, including in
particular, those associated with movement disorders. More broadly, the data
will also be useful in large scale investigations of genetic factors and other
biological mechanisms that may be involved in the etiology of Parkinson’s
disease and/or in determining the trajectory of disease in individuals.

The Australia Parkinson's Disease
Registry will not be openly accessible but de-identified data and samples
are accessible upon review and Human Research Ethics Committee Approval. Applications (see application form above) can
be made to the CRC for Mental Health at: [e-mail]

简要描述

澳大利亚帕金森病登记处（APDR）是由维多利亚州、西澳大利亚州和新南威尔士州的研究人员共同发起的协作项目，并由精神健康合作研究中心（CRC）管理。该登记处包含两个独立的队列：一组帕金森病志愿者队列（N = 314）和一组无帕金森病症状的志愿者队列（N = 103），两组志愿者均提供了血液和生物样本，作为澳大利亚和国际研究人员的研究平台。此外，帕金森病患者已使用统一帕金森病评定量表（UPDRS）和其他临床量表进行表型分析，而对于健康对照组，也提供了帕金森病的简要家族史。

详细描述

澳大利亚帕金森病登记处拥有以临床量表、血液和生物样本检测结果形式的长序列数据。

该生物样本库包括来自三个地点的400名年龄超过18岁的参与者的数据，他们贡献了血液和其他生物样本、临床问卷（例如神经心理学评估）以及其他临床信息。

收集的数据包括以下内容：

- 根据临床量表对帕金森病患者进行表型分析
- 人口统计学、诊断、帕金森病家族史（n=400）
- 生物样本（N = 400+）：血浆（EDTA处理或肝素化）、血清（EDTA处理或肝素化）、血小板、红细胞、白细胞、血小板、DNA、RNA和CSF的等分样本
- 血液检测结果（N = 400+）：血浆、血清、DNA、RNA、白细胞、红细胞、全血和CSF样本的处理结果

备注

这些数据目前存储在由墨尔本大学研究平台服务运营的Mediaflux数字资产管理系统中。

精神健康CRC已建立大型队列，并利用基因组学、蛋白质组学、脂质组学和金属组学等先进技术，以识别阿尔茨海默病、帕金森病、精神分裂症和情绪障碍的研究生物标志物。这些生物样本库为在真实人群中发现生物标志物提供了重要资源，并确保我们的研究发现在医疗和健康保健实践中得到整合。精神健康CRC与弗洛雷研究所合作创建和管理澳大利亚帕金森病登记处。

在CRC的资助期限于2018年6月30日到期后，弗洛雷研究所将成为澳大利亚帕金森病登记处的保管人。

意义声明

澳大利亚帕金森病登记处的数据和样本将用于未来的研究，以发现和验证帕金森病和其他神经退行性疾病（特别是与运动障碍相关的疾病）的诊断和监测治疗效果的生物标志物。更广泛地说，这些数据也将有助于大规模调查可能与帕金森病的病因或个体疾病轨迹相关的遗传因素和其他生物机制。

澳大利亚帕金森病登记处的数据将不会公开访问，但经审查和人类研究伦理委员会批准后，可以获取脱敏数据样本。申请（见上面的申请表格）可发送至精神健康CRC：[e-mail]