AMYOTROPHIC LATERAL SCLEROSIS RESEARCH GROUP [ALS RG] COLLECTION OF DATA AND BI

这个子项目是许多研究子项目中利用 资源由NIH/NCRR资助的中心拨款提供。子项目和 调查员(PI)可能从NIH的另一个来源获得了主要资金， 并因此可以在其他清晰的条目中表示。列出的机构是 该中心不一定是调查人员的机构。 肌萎缩侧索硬化症和相关的运动神经元疾病是导致肌肉无力的神经系统疾病。在大多数患者中，病因尚不清楚。为了研究一个人的遗传物质中可能的原因，ALS研究小组[ALS RG]的研究人员需要血液样本以及来自患者和对照组的一些与健康相关的基本病史和家族史信息。这项研究正在以一种安全和匿名的方式收集血液样本和信息，为未来研究ALS和其他疾病的原因提供依据。 确定ALS的其他病因将提高对该病的基因诊断，并可能导致对其发病机制的更好理解。一旦考虑到新的遗传病因或致病机制，从具有良好特征的ALS患者群体中获得大量DNA样本和细胞系将加速对正在考虑的病因因素的作用的研究。 因此，我们正在组织美国和加拿大各地的肌萎缩侧索硬化症护理和研究中心合作，向国家神经疾病和中风研究所(NINDS)人类遗传学储存库提交供DNA和细胞系储存的血液样本。然后，储存库中的样本和数据将提供给合格的研究人员，包括但不限于参与地点。数据和生物材料可用于研究肌萎缩侧索硬化症和其他疾病的原因。NINDS监督对向存储库提出的请求的审查，以及公平、合乎道德和及时地分发数据和标本。这项研究的目标是在两年内在北美的几个地点收集2000份血液样本。

This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. The subproject and investigator (PI) may have received primary funding from another NIH source, and thus could be represented in other CRISP entries. The institution listed is for the Center, which is not necessarily the institution for the investigator. Amyotrophic lateral sclerosis and related motor neuron disorders are neurological diseases that cause muscle weakness. In most patients, the cause is unknown. To study possible causes in a person's genetic material, the ALS Research Group [ALS RG] researchers need blood samples and some basic health-related medical and family history information from patients and controls. This study is collecting the blood samples and information for future research into the causes of ALS and other diseases in a safe and anonymous way. Identifying additional etiologic factors in ALS would improve the genetic diagnosis of the disease and might lead to a better understanding of its pathogenesis. Once new genetic etiologies or pathogenic mechanisms are considered, the availability of a large repository of DNA samples and cell lines from a well characterized ALS patient population would accelerate research into the role of the etiologic factor under consideration. We are therefore organizing a collaborative effort of ALS care and research centers across the United States and Canada to submit blood samples for DNA and cell line banking to the National Institute of Neurological Disorders and Stroke (NINDS) Human Genetics Repository. The samples and data in the repository will then be available to qualified researchers including but not limited to the participating sites. Data and biomaterial may be used for research into the causes of ALS and other diseases. The NINDS oversees the review of requests to the repository and the equitable, ethical and timely distribution of data and specimen. The goal of this study is to collect 2000 blood samples over two years at several sites throughout North America.