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

Publication
Affiliates Karin N. Wagner [1], Haikady Nagaraja [2], Dawn C. Allain [1,3], Adam Quick [4], Stephen Kolb [4,5], Jennifer Roggenbuck [3,4]

 

[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.
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