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

ABSTRACT:

Background

Amyotrophic lateral sclerosis (ALS) is increasingly recognized as a genetic disease. There is no consensus, however, as to the role of genetic testing in the care of the ALS patient.

Methods

We conducted a survey to study patient access, attitudes, and experience with ALS genetic testing among patients enrolled in a US ALS registry.

Results

Among 449 survey respondents, 156 (34.7%) were offered testing and 105 of 156 (67.3%) completed testing. The majority of respondents with familial ALS (fALS) (31/45, 68.9%) were offered testing, while a minority of respondents with sporadic ALS (sALS) (111/404, 27.5%) were offered testing (p = .00001). Comparison of mean test experience scores between groups revealed that respondents with fALS were no more likely to repo

SUBMITTER: Wagner KN 

PROVIDER: S-EPMC5902388 | biostudies-literature | 2018 Mar

REPOSITORIES: biostudies-literature