FindTrial
Sign In

Experiences of families raising children with epidermolysis bullosa: a scoping review

Experiences of families raising children with epidermolysis bullosa: a scoping review - Experiences of families raising children with epidermolysis bullosa: a scoping review

Status
Active, not recruiting
Phases
Unknown
Study type
Unknown
Source
JPRN
Registry ID
JPRN-UMIN000061638
Enrollment
Unknown
Registered
2026-05-20
Start date
2026-05-20
Completion date
Unknown
Last updated
2026-06-29

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Epidermolysis Bullosa

Interventions

None listed

Sponsors

Hokkaido University
Lead Sponsor

Eligibility

Sex/Gender
All

Inclusion criteria

Inclusion criteria: Studies investigating the experiences and perceptions of families raising children diagnosed with epidermolysis bullosa (regardless of disease subtype).

Exclusion criteria

Exclusion criteria: Studies focused exclusively on end-of-life care. Studies reporting solely from the perspective of healthcare professionals without incorporating the family's perspective.

Design outcomes

Primary

MeasureTime frame
Synthesis of domestic and international evidence on the parenting and caregiving experiences of families raising children with epidermolysis bullosa—

Countries

Japan

Contacts

Public ContactKeita Sasaki

Faculty of Health Sciences, Hokkaido University Comprehensive Developmental Nursing

k_sasaki@hs.hokudai.ac.jp0117064915

Outcome results

None listed

Source: JPRN (via WHO ICTRP) · Data processed: Jul 3, 2026