Interests and Experiences of Young Adults with Muscular Dystrophy in Receiving Genetic Information.

ABSTRACT: Growing public awareness of genetic research, increased availability of genetic testing options, and the recent arrival of several gene-targeted therapies have combined to make genetic testing a topic of interest within many disease communities, including muscular dystrophies. We sought to investigate the genetic information received, the genetic services provided, the genetic information and services of interest to young adults with muscular dystrophy, and to identify existing gaps in the delivery of genetic information and services. Young adults with muscular dystrophy were surveyed about their interests and experiences in receiving genetic information/testing. Surveys were completed by 226 young adults with muscular dystrophy (150 male, 72 female; mean age = 21.6 years, range = 16-25 ye

SUBMITTER: Hammond L 

PROVIDER: S-EPMC12332222 | biostudies-literature | 2025 Sep

REPOSITORIES: biostudies-literature