Infrastructure resources for clinical research in amyotrophic lateral sclerosis

Key points

Describes infrastructure of ALS clinical research resources

Affiliates

Alexander V. Sherman1, Amelie K. Gubitz2, Ammar AlChalabi3, Richard Bedlack4, James Berry5, Robin Conwit2, Brent T. Harris6, D. Kevin Horton7, Petra Kaufmann2, Melanie L. Leitner8, Robert Miller9, Jeremy Shefner10, Jean Paul Vonsattel11, and Hiroshi Mitsumoto12

  1. Neurological Clinical Research Institute (NCRI), Massachusetts General Hospital
  2. National Institute of Neurological Disorders and Stroke (NINDS), NIH
  3. Department of Clinical Neuroscience, Kings College London, Institute of Psychiatry
  4. Division of Neurology, School of Medicine, Duke Institute for Brain Sciences
  5. Department of Neurology, Massachusetts General Hospital
  6. Department of Neurology, Georgetown University Medical Center
  7. Agency for Toxic Substances and Disease Registry, US Department of Health and Human Services
  8. Prize4Life, Cambridge
  9. The Forbes Norris MDA/ALS Research Center, California Pacific Medical Center
  10. Department of Neuroscience and Physiology, SUNY Upstate Medical University
  11. Department of Pathology and Cell Biology, New York-Presbyterian Hospital, Columbia University Medical Center
  12. Eleanor and Lou Gehrig MDA/ALS Research Center, Department of Neurology, Columbia University Medical Center

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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Agency for Toxic Substances and Disease Registry