Patients with sporadic and familial amyotrophic lateral sclerosis found value in genetic testing

At a glance

A review of a survey conducted on the attitudes and experiences with ALS genetic testing

Affiliates

Karin N. Wagner1, Haikady N. Nagaraja2, Dawn C. Allain1,3, Adam Quick4, Stephen J. Kolb4,5, Jennifer Roggenbuck3,4

  1. Genetic Counseling Graduate Program, The Ohio State University
  2. Division of Biostatistics, College of Public Health, The Ohio State University
  3. Division of Human Genetics, Wexner Medical Center, The Ohio State University
  4. Department of Neurology, Wexner Medical Center, The Ohio State University
  5. Department of Biological Chemistry and Pharmacy Wexner Medical Center, The Ohio State University

Journal

Molecular Genetics & Genomic Medicine

Summary

For both sporadic and familial ALS, there is growing evidence of the role of genetics. What is unclear, is the role of genetic testing in the care of the PALS. Using outreach via the National ALS Registry, data was collected on patient access, attitudes, and experience with ALS genetic testing from 449 survey respondents. Of these 449 respondents, 156 were offered testing and 105 completed testing, most of whom have familial ALS. Results from this study indicate that patients with ALS found value in clinical genetic testing.

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