An international observational study on transition of care from paediatric to adult services for patients with mucopolysaccharidosis II
Karolina M. Stepien, Olulade Ayodele, Joseph Muenzer, Roberto Giugliani, Christina Jackson, Laura Meade, Maurizio Scarpa, Christina Lampe, Jennifer Audi, Siddharth Jain, Mireia del Toro · 2026
Read An international observational study on transition of care from paediatric to adult services for patients with mucopolysaccharidosis II by Karolina M. Stepien, Olulade Ayodele, Joseph Muenzer, Roberto Giugliani, Christina Jackson, Laura Meade, Maurizio Scarpa, Christina Lampe, Jennifer Audi, Siddharth Jain, Mireia del Toro (2026) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/pmc-13248298.txt.
Description
Stepien and an international team studied how young people with Hunter syndrome move to adult care, reported in 2026. Enzyme treatment has helped many patients with this rare disease live into adulthood. Yet the handover from children's to adult services follows no standard path, so the team interviewed patients, caregivers, and clinicians across six countries.
Participants named continuity of care, one key contact person, and early preparation as marks of a good transfer. Practice varied widely within and between countries. The group proposed shared standards, more teaching and support materials, and psychological help, with extra thought for patients whose disease affects the brain.
Catalog record
| CREATOR | Karolina M. Stepien, Olulade Ayodele, Joseph Muenzer, Roberto Giugliani, Christina Jackson, Laura Meade, Maurizio Scarpa, Christina Lampe, Jennifer Audi, Siddharth Jain, Mireia del Toro |
|---|---|
| YEAR | 2026 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 73 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |