An English research group investigated the general acceptance of an extended newborn screening for spinal muscular atrophy in affected families (Boardman et al). More than 70% of the investigated family members appreciated a screening program. One of the most important issues is the possibility of an optimal medical care and the participation in a clinical trial before onset.
Authors: Boardman FK, Young PJ, Griffiths FE.
Publication: Newborn screening for spinal muscular atrophy: The views of affected families and adults. Am J Med Genet A. 2017;173(6):1546-1561.