Patients with amyotrophic lateral sclerosis have high interest in and limited access to genetic testing

At a glance

Survey results among ALS patients gauging interest in genetic testing and access to it

Affiliates

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

  1. Genetic Counseling Graduate Program, The Ohio State University
  2. Division of Biostatistics, The Ohio State University
  3. Division of Human Genetics, Department of Internal Medicine, The Ohio State University
  4. Department of Neurology, The Ohio State University
  5. Department of Biological Chemistry and Pharmacy, The Ohio State University

Journal

Journal of Genetic Counseling

Summary

Genetic testing for ALS is widely available, but there are concerns related to access and patient attitudes towards ALS genetic testing. PALS registered with the ALS Registry were solicited for survey responses regarding access and interest to genetic testing. Results from this study suggested that ALS patients may have limited access to genetic testing but perceive benefits from this service. Development of practice guidelines for genetic testing in ALS to include the routine offer of genetic counseling, may results in broader and more consistent access to these services.

Link to paper

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Content Source:
Agency for Toxic Substances and Disease Registry