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

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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.