Social Participation of Patients with Epidermolysis Bullosa

Social Participation of Patients with Epidermolysis Bullosa - P-EB

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00033763

Enrollment

102

Registered

2024-07-10

Start date

2024-07-22

Completion date

Unknown

Last updated

2025-04-07

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

Conditions

Q81

Interventions

Group 1: Patients with Epidermolysis bullosa are surveyed once with a questionnaire on social participation. Group 2: Narrative Interviews with people affected by Epidermolysis bullosa

Eligibility

Sex/Gender

All

Age

18 Years to No maximum

Inclusion criteria

Inclusion criteria: Affected by Epidermolysis bullosa and sufficient German speaking/reading skills

Exclusion criteria

Exclusion criteria: Not affected by Epidermolysis bullosa, not sufficient German speaking/reading skills

Design outcomes

Primary

Measure	Time frame
Social participation measured with (5/24 - 11/24): - Inventar zur Messung der Einschränkung der Teilhabe (IMET) - Kurz-Skala zur Erfassung wahrgenommener sozialer Teilhabe (KsT-5) The survey is expected to start 7/24 and will run for six months.	—

Secondary

Measure	Time frame
- Membership in a patient organization and/or networking with other patients (self generated items) - Socioeconomic status (self generated items)	—

Countries

Germany

Contacts

Public ContactCristina Has

Universitätsklinkum Freiburg, Klinik für Dermatologie und Venerologie

cristina.has@uniklinik-freiburg.de+49 (0)761 270-69920

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 4, 2026