Effects of participation in an interdisciplinary training programme on variants of sex development (Empower DSD) on diagnosis-specific knowledge, coping with the diagnosis and quality of life of children, adolescents and young adults with congenital adrenal hyperplasia and their parents.

Effects of participation in an interdisciplinary training programme on variants of sex development (Empower DSD) on diagnosis-specific knowledge, coping with the diagnosis and quality of life of children, adolescents and young adults with congenital adrenal hyperplasia and their parents. - Follow-up Empower DSD

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00038575

Enrollment

Registered

2026-01-08

Start date

2024-10-19

Completion date

Unknown

Last updated

2026-01-12

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

Conditions

ORPHA:90795

Interventions

Group 1: Survey of children, adolescents, young adults, and their parents at least two years after participating in the Empower-DSD training programme. Group 2: One-time survey of children, adolescent

Eligibility

Sex/Gender

All

Age

6 Years to 28 Years

Inclusion criteria

Inclusion criteria: - Patients with CAH - Parents/caregivers of children with CAH - Participation in the Empower DSD study for group 1 - Consent has been obtained from affected individuals (aged 8 and above) and parents/caregivers. - Children between 8 and 13 years of age - Adolescents between 14-18 years of age - young adults >18-26 years of age - Parents/carers of affected children/adolescents or young adults

Exclusion criteria

Exclusion criteria: - Lack of consent forms from participants (affected individuals, parents/caregivers) - Participation in other studies dealing with training in DSD diagnosis - DSD diagnosis other than CAH

Design outcomes

Primary

Measure	Time frame
How does the diagnosis-specific knowledge of former participants compare to that of the control group without training at least two years after the training? Use of a questionnaire on diagnosis-specific knowledge.	—

Secondary

Measure	Time frame
1) How does treatment adherence among training participants (children, adolescents, young adults with AGS) compare to the control group? 2) How does the frequency of adrenal crises compare between training participants (children, adolescents, young adults with CAH) and the control group without training? 3) How do quality of life (measured using the KINDL questionnaire for children up to 18 years of age, or the WHO-5 questionnaire for participants >18 years of age), coping with the diagnosis, and the burden of the diagnosis compare between training participants and the control group?	—

Measure

Time frame

1) How does treatment adherence among training participants (children, adolescents, young adults with AGS) compare to the control group? 2) How does the frequency of adrenal crises compare between training participants (children, adolescents, young adults with CAH) and the control group without training? 3) How do quality of life (measured using the KINDL questionnaire for children up to 18 years of age, or the WHO-5 questionnaire for participants >18 years of age), coping with the diagnosis, and the burden of the diagnosis compare between training participants and the control group?

—

Countries

Germany

Contacts

Public ContactUta Neumann

Charité Universitätsmedizin Berlin

uta.neumann@charite.de+4930450666804

Outcome results

None listed

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