Endurance tests that capture upper and lower body fatigue in spinal muscular atrophy patients — across ages, from children to adults, and degrees of disease severity — was proposed in a new study. These tests, combined, are intended to help researchers and clinicians better evaluate and treat fatigue, so as…
Treatment with Spinraza (nusinersen) benefits spinal muscular atrophy patients in terms of survival and quality of life of patients and caregivers, a study conducted in Sweden shows. However, Spinraza treatment was not considered cost-effective, as it exceed the willingness-to-pay threshold set by the Swedish…
For people with spinal muscular atrophy (SMA), psychological well-being is not driven by socioeconomic factors or even illness characteristics. Instead, patients closely relate it to being content with their ability to participate in activities, and to their sense of autonomy, competence, and relatedness, researchers report. Their article, “…
When caring for a child with spinal muscular atrophy (SMA), health care staff do not make treatment decisions without informing parents, but there’s still room for improvement to provide information about the disease, treatment options, and prognosis for parents to feel confident about their decisions, a Danish survey reports. The research…
Several key factors influence how and why some patients and their families may be hesitant to pursue, or decide to forego, Spinraza (nusinersen) treatment, a study has found. These considerations include side effects, high cost, insurance coverage, and a lack of data on the therapy’s effectiveness. By addressing these…
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