DMD Transition to Adulthood: Systematic Review of Health Systems and Policies

42 studies from a PRISMA-compliant systematic review examine the transition from pediatric to adult care for Duchenne Muscular Dystrophy. The review, authored by Sebastian Friedrich and updated in 2026, aggregates heterogeneous quantitative, qualitative, and mixed-methods evidence from six major databases. It identifies a significant disconnect between international care guidelines and their implementation, with most initiatives being project-based.

Use Cases

• Analyzing gaps between clinical guidelines and real-world implementation based on the review's findings.
• Mapping the roles of different medical specialties (e.g., neurology, respiratory medicine) in adult DMD care based on the described evidence synthesis.
• Identifying research priorities for neurodevelopmental comorbidities in DMD based on the noted scarcity of studies addressing this.
• Evaluating the sustainability of project-based versus policy-driven healthcare initiatives for rare diseases.

Strengths

• Follows a PRISMA-compliant systematic review methodology, ensuring a structured evidence search.
• Synthesizes evidence from 42 studies across six major academic databases (OVID Medline, Embase, etc.).
• Applies a narrative synthesis framework to aggregate heterogeneous quantitative, qualitative, and mixed-methods data.
• File is openly licensed under CC-BY-4.0, permitting reuse with attribution.

Limitations

• The dataset is very small (58.5 KB), indicating limited raw data or a summary table.
• Row count and column-level documentation are unknown, requiring manual inspection after download.
• The data reflects a literature review up to August 2025, which may not capture the most recent studies.

Provenance

Source

figshare, authored by Sebastian Friedrich.

Collection Method

PRISMA-compliant systematic review with narrative synthesis of literature from six databases.

Time Range

Literature search covers January 1, 2000, to August 31, 2025.

Freshness

Last updated 2026-05-29 05:32:03.