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DIALS (Dominant Inherited ALS) Network Research Summary

November 30, 2016

Research Summary

While evidence of a pre-symptomatic period has emerged for a number of neurodegenerative diseases, a similar precursor period prior to symptom development in ALS has yet to be defined, and pre-symptomatic biomarkers of ALS have yet to be discovered. As a result, researchers are unable to target people in the very earliest stages of ALS, when neurodegeneration is most nascent and may be most easily modified or halted.
 
Current barriers to genetic testing in asymptomatic family members of people with ALS include insurance eligibility and cost. By using a funded research platform to perform CLIA-certified genetic testing at the New York Genome Center (NYGC) and develop a standardized approach to genetic counseling in ALS, we can break down these barriers.
 
This multicenter initiative between Massachusetts General Hospital and Washington University will provide a mechanism for genetic testing for 40 first-degree relatives of people with C9ORF72 or SOD1-related ALS. The DIALS network will establish a platform for genetic counseling and support for families affected by ALS, and promote longitudinal biomarker discovery and outcome development in the pre-symptomatic period of the disease.
 
By studying a population at risk for developing the disease, this project may hold the key to understanding the initial biological events in ALS. It will further our understanding of underlying early disease pathophysiology to allow for development of novel therapeutics that target the earliest changes in ALS and allow for possible disease prevention.

Investigators

    • Katherine Nicholson MD
    • Timothy Miller MD, PhD
    • James Berry MD

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Advisory Board

  • Leandro P. Rizzuto
  • Peter N. Foss
  • Merit  Cudkowicz, MD
  • Denis  Rizzuto
  • Stanley H. Appel, MD
  • Robert  Brown, D.Phil., MD
  • Tom  Gentile
  • Clive  Svendsen, PhD
  • Richard  Ellenbogen, MD
  • Randy  Fishman
  • Edward J. Rapp
  • Sudha  Maniam