The Rare Diseases Clinical Research Network is an NIH-funded research network of 20 active consortia or research groups working to advance treatment for diseases that are rare. Use the search tools on this page to find the diseases we currently study. You can reach out to the indicated consortia or research groups for more information on those diseases and studies underway.
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All Diseases > Amyotrophic Lateral Sclerosis
Amyotrophic Lateral Sclerosis (ALS)
Alternative Names: Lou Gehrig's Disease (ALS)
Disease Category: ALS and Related Disorders
Amyotrophic lateral sclerosis (ALS), also referred to as Lou Gehrig's Disease, is a progressive motor neuron disease that leads to problems with muscle control and movement. Various types of ALS are distinguished by symptoms and, in some cases, genetic cause. The Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium conducts research in the sporadic and familial forms of amyotrophic lateral sclerosis, frontotemporal dementia (FTD), primary lateral sclerosis (PLS), hereditary spastic paraplegia (HSP), and progressive muscular atrophy (PMA).
Research groups studying this disease
ALS and Related Disorders
The purpose of the Clinical Procedures to Support Research in ALS (CAPTURE-ALS) study is to utilize information collected in the medical record to learn more about a disease called amyotrophic lateral sclerosis (ALS) and related disorders.
The purpose of this study is to learn more about amyotrophic lateral sclerosis (ALS) and other related neurodegenerative diseases, including frontotemporal dementia (FTD), primary lateral sclerosis (PLS), hereditary spastic paraplegia (HSP), progressive muscular atrophy (PMA) and multisystem proteinopathy (MSP). More precisely, the investigator wants to identify the links that exist between the disease phenotype (phenotype refers to observable signs and symptoms) and the disease genotype (genotype refers to your genetic information). The investigator also wants to identify biomarkers of ALS and related diseases.
Supports efforts to transform the lives of people with muscular dystrophy, ALS, and related neuromuscular diseases.
Aims to improve the quality of life of people affected by frontotemporal degeneration (FTD) and drive research to a cure.
Supports research to cure two similar upper motor neurological diseases: hereditary spastic paraplegia and primary lateral sclerosis.
Focuses on care, advocacy, and research to discover treatments and a cure for ALS while empowering those affected to live life to the fullest.