Infrastructure resources for clinical research in amyotrophic lateral sclerosis
Affiliates | Alexander V. Sherman [1], Amelie K. Gubitz [2], Ammar AlChalabi [3], Richard Bedlack [4], James Berry [5], Robin Conwit [2], Brent T. Harris [6], D. Kevin Horton [7], Petra Kaufmann [2], Melanie L. Leitner [8], Robert Miller [9], Jeremy Shefner [10], Jean Paul Vonsattel [11], and Hiroshi Mitsumoto [12]
[1] Neurological Clinical Research Institute (NCRI), Massachusetts General Hospital |
Journal | Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration |
Summary | This publication focuses on the availability of infrastructure resources collecting clinical and patient oriented data that could bolster our understanding of the etiology and pathogenesis of ALS. The authors’ key recommendations were to 1) establish shared knowledge amongst ALS databases; 2) expand human biospecimen banks; 3) and adopt universal standards for ALS clinical research. Existing infrastructure resources for ALS clinical research include: the Western ALS Consortium, Northeast ALS Consortium, Prize4Life, University banks and repositories, ALS Research Group (ALSRG), ALS Clinical Research Leaning Institute, the Network for Excellence in Neuroscience Clinical Trials (NeuroNEXT), and the National ALS Registry. |
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