陈彪教授:神经变性病国家大数据平台构建及全程管理| NCN2019

2019-09-23 Violet MedSci原创

神经变性病是指由于神经元变性和继发性脱髓鞘变化的一组慢性、多变化的进展性疾病,包括阿尔茨海默病(AD)、帕金森病(PD)等。我国人口老龄化导致神经变性病急剧增加:2030年,65岁及以上人口中,世界上57%的PD患者在中国。9月20日,来自首都医科大学宣武医院的陈彪教授在中华医学会第二十二次全国神经病学学术会议上讲解了神经变性病国家大数据平台构建及全程管理的有关问题,呼吁同仁们一起构建和分享神经变

神经变性病是指由于神经元变性和继发性脱髓鞘变化的一组慢性、多变化的进展性疾病,包括阿尔茨海默病(AD)、帕金森病(PD)等。我国人口老龄化导致神经变性病急剧增加:2030年,65岁及以上人口中,世界上57%的PD患者在中国。

9月20日,来自首都医科大学宣武医院的陈彪教授在中华医学会第二十二次全国神经病学学术会议上讲解了神经变性病国家大数据平台构建及全程管理的有关问题,呼吁同仁们一起构建和分享神经变性病的大数据平台



他指出控制神经变性病的关键在于早期诊断和干预。研究证实部分去世前没有运动和认知障碍的老年人死后脑病理检查发现存在特征性病理改变,提示他们成功避了疾病的临床发生。现今该类疾病的瓶颈是疾病的自然史和相关标记物,只有发现不同疾病阶段和临床亚型的相关生物标记物,才能找到充分的支持依据启动针对高危人群的干顶手段的确证性临床试验研究。

标准化、大样本、多维度信息采集是基础,建立开放共享大数据平台是非常必要的,因为有利于生物标志物研发,可以进行预警和分型;另一方面,也通过长期动态观察来进行精准治疗。

国外神经变性病有很多相关的研究和计划,如英国NIH和企业分4阶段资助近200亿美金;美国和加拿大多家研究机构共同开展针对AD的神经影像学研究计划(ADNI)等。由美国福克斯基金会NIH和企业资助近10亿美元的“帕金森病进展相关标记物研究计划(PPMI)”,短短几年内学者们利用该开放共享平台数据发表了近100篇的文章,帮助临床创新药物试验方案的设定。

国内疾病队列研究存在问题,以回答特定科学问题或单纯样本收集为导向,缺乏长期随访;重收集,轻利用;以学科优势单位参与为主,缺乏专病医生组织或联盟参与。所以构建自愿共建、共享和开放的国家神经变性病注册登记数据库和临床大数据共享平台是目前重要且急迫的工作。

陈彪教授介绍神经变性病临床研究大数据与生物样本库平台建设和应用研究是国家重点研发计划(编号:2018YFC1312000),建立全国范围的、统一标准的临床信息和生物样本注册登记平台,按照临床实验GCP标准,建立前瞻性、多中心人群队列。建立全国临床研究网络,如中国帕金森联盟、“郁金香计划”、帕金森门诊地图、研发穿戴和人工智能设备等。

统一电子病历系统量表标准规范,患者管理和临床研究相结合,实施多中心研究计划,可以网上登记、独立运行,样本采集统一标准,集中和自主保存结合(每个中心对本中心的数据有独立的管理权和完全的支配权),涉及到统一核磁数据采集、分析和判读平台、Brain Label脑影像自动量化分析云平台、脑区功能影像自动量化分析和报告、标准化分子影像数据采集平台。

疾病管理进行线下线上相结合、全时空管理体系;疾病预防方面进行高危入群筛选及随访;建立全新的慢病诊疗预防的生态体系。

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    2020-07-16 lifestar
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    2019-09-25 huangdf
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