Data Sheet 1_Transition to adulthood in Duchenne Muscular Dystrophy: a systematic review w

A PRISMA-compliant systematic review of 42 studies from 2000 to 2025, examining health systems, policies, and provider roles in the transition from pediatric to adult care for Duchenne muscular dystrophy. The review, authored by Sebastian Friedrich and published on figshare in 2026, utilized narrative synthesis to analyze heterogeneous data. It identifies a disconnect between international guidelines and implementation, noting that support for neurodiverse patients was discussed in only 4 of the 42 studies.

Use Cases

• Identify gaps in health system policies for rare disease care transitions based on the review's analysis of 42 studies.
• Analyze the shift in medical specialties from neurology to respiratory medicine during patient transition based on findings described in the results.
• Benchmark project-based transition initiatives against sustainable policy models based on the review's conclusion about funding gaps.

Strengths

• Analysis is based on 42 included studies meeting specific inclusion criteria.
• The review covers literature from six major databases over a 25-year period (2000-2025).
• Employs a defined methodological framework (PRISMA and Popay's Narrative Synthesis).

Limitations

• The dataset is a 676.9 KB document, indicating a limited scope of raw data.
• Column-level documentation is absent; field semantics must be inferred after download.
• Data may reflect geographic or institutional bias inherent to the literature reviewed.

Provenance

Source

figshare

Collection Method

Systematic literature review searching OVID Medline, Embase, PsycINFO, CINAHL, Web of Science, and SCOPUS.

Time Range

2000-01-01 to 2025-08-31

Freshness

Last updated 2026-05-29 05:32:04