New analysis finds survival in Duchenne muscular dystrophy has improved over time
Patients receiving home breathing support had longer median survival in the studies, while causes of death increasingly included heart-related and other conditions.
High evidenceReviewSome caution advised
Medical disclaimer: This article summarizes research findings and is for informational purposes only. It is not medical advice.
Editorial illustration — not from the study.
Researchers combined published studies from 1977 through October 13, 2025, to examine how survival in Duchenne muscular dystrophy changed across eras. They compared findings for patients who did and did not receive home mechanical ventilation and assessed associations with several treatments and causes of death.
The pooled median survival was 29 years among patients who received home mechanical ventilation and 19 years among those who did not. Survival improved over time in both groups. Mortality shifted from being mainly respiratory to including a greater contribution from cardiac and other causes.
What the review examined
The researchers conducted a registered systematic review and cumulative meta-analysis of studies reporting survival in people with Duchenne muscular dystrophy. The search covered PubMed records from 1977 through October 13, 2025. The 53 included studies had a median follow-up of 8 years and included more than 13,000 patients; 60% received home mechanical ventilation. The researchers calculated pooled median-survival estimates, examined subgroups based on ventilation and study period, used meta-regression, and assessed risk of bias with the Newcastle-Ottawa Scale.
What the review concluded
Across the included studies, median survival was 29 years for patients receiving home mechanical ventilation, with a 95% confidence interval of 27 to 31 years, compared with 19 years for patients not receiving it, with a 95% confidence interval of 18 to 20 years. Survival improved progressively over time in both groups. These comparisons show associations and may also reflect differences between patients, healthcare systems, and study periods rather than an effect of ventilation alone.
Glucocorticoid therapy was not statistically associated with longer survival in this analysis. Heart-failure medications, including renin-angiotensin system inhibitors and beta-blockers, were associated with longer survival. Because the review combined study-level observational evidence and the abstract does not describe randomized treatment comparisons, these medication findings do not prove that the medications caused the difference. The reported main cause of death shifted from respiratory causes toward cardiac and other causes over time.
Who this is relevant to
The findings are most directly relevant to people with Duchenne muscular dystrophy who are similar to the patients represented in the included studies, across the periods and healthcare settings examined. They may not apply equally to every person with Duchenne muscular dystrophy or to people with other muscular dystrophies. The review describes population-level associations and cannot predict an individual's survival or show that a specific treatment will produce the same outcome for an individual.
The significance
The findings indicate that survival for people with Duchenne muscular dystrophy in the published literature has increased across successive eras, with the pooled median approaching the third decade of life among patients receiving home mechanical ventilation. They also show that the pattern of mortality has changed, with cardiac and other non-respiratory causes making up a larger share. This information may help describe changing outcomes for people with Duchenne muscular dystrophy, but it does not determine an individual person's prognosis or establish which treatment is responsible for longer survival.
Limitations & evidence assessment
This was a study-level meta-analysis, so the researchers generally analyzed groups reported in published studies rather than individual patient records. The underlying studies may have differed in patient characteristics, treatment practices, follow-up, and definitions of survival and causes of death. The abstract reports a risk-of-bias assessment but does not provide its detailed results, and it does not fully describe the designs of all 53 studies. Comparisons between ventilated and non-ventilated patients and associations with medications may be affected by differences in disease severity, access to care, calendar year, and other factors. The search ended on October 13, 2025, so later evidence was not included.
Why this evidence level: Meta-analysis pooling multiple studies sits at the top of common evidence hierarchies.
Evidence levels are editorial estimates derived from study metadata — they are not clinical appraisals.
// Source
Journal of Neurology · 2026 · DOI: 10.1007/s00415-026-14121-4
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