Amyotrophic lateral sclerosis & frontotemporal degeneration
-
Amyotroph Lateral Scler Frontotemporal Degener · May 2013
Review Meta AnalysisStatins and amyotrophic lateral sclerosis: a systematic review and meta-analysis.
To evaluate the association between statins and the incidence and progression of amyotrophic lateral sclerosis (ALS). ⋯ No definite association between statin use and ALS incidence and progression has been found. Existing results are currently inconclusive to make scientifically supported conclusions. Further prospective cohort studies are still needed.
-
Amyotroph Lateral Scler Frontotemporal Degener · May 2013
ReviewFunding agencies and disease organizations: resources and recommendations to facilitate ALS clinical research.
Ten groups presented their perspectives on facilitating clinical research in ALS including four federal agencies, four disease organizations, one foundation and one advocacy group. The federal agencies (National Institute of Neurological Disorders and Stroke, National Institute of Environmental Health Sciences, Office of Rare Diseases Research, Department of Defense) encourage fostering a team approach between pre-clinical and clinical research investigators, coordinating with patient groups in the early phases of clinical studies, enhancing private and public partnerships, and investigating the interplay between genetic susceptibility and environmental exposure. The disease organizations (Muscular Dystrophy Association, ALS Association, ALS Society of Canada, and the Motor Neurone Disease Association UK) support fellowship training programs to develop ALS clinician scientists, and encourage work on the epidemiology of ALS, on genetic and epigenetic mechanisms that are relevant to ALS pathogenesis, on developing ALS registries and biobanks, and building bridges of collaboration among study groups. The Foundation supports innovative projects, including stem-cell research, and Patient Advocacy is committed to supporting excellence in ALS research and patient care, and believes strongly in enhancing communication between patients and members of the research community.
-
Amyotroph Lateral Scler Frontotemporal Degener · May 2013
ReviewInfrastructure resources for clinical research in amyotrophic lateral sclerosis.
Clinical trial networks, shared clinical databases, and human biospecimen repositories are examples of infrastructure resources aimed at enhancing and expediting clinical and/or patient oriented research to uncover the etiology and pathogenesis of amyotrophic lateral sclerosis (ALS), a rapidly progressive neurodegenerative disease that leads to the paralysis of voluntary muscles. The current status of such infrastructure resources, as well as opportunities and impediments, were discussed at the second Tarrytown ALS meeting held in September 2011. ⋯ Key recommendations included 1) the establishment of shared databases among individual ALS clinics to enhance the coordination of resources and data analyses; 2) the expansion of quality-controlled human biospecimen banks; and 3) the adoption of uniform data standards, such as the recently developed Common Data Elements (CDEs) for ALS clinical research. The value of clinical trial networks such as the Northeast ALS (NEALS) Consortium and the Western ALS (WALS) Consortium was recognized, and strategies to further enhance and complement these networks and their research resources were discussed.