Australian researchers wanted to know how newborn screening (NBS) for Duchenne muscular dystrophy (DMD) would be perceived at a time when innovative, supposedly effective therapies are being announced:
- 50 caregivers and 26 healthcare professionals took part in a survey,
- the vast majority (80%) said they were in favor of screening, even if few knew the details and limitations of the innovative therapies announced,
- the possibility of starting treatment earlier, taking part in clinical trials, and providing psychological support and genetic counseling were all highlighted,
- on the other hand, the lack of truly effective therapies to offer at this age clearly limits full adherence to screening programs.
These studies reflect the complexity of the DNN issue in DMD.
