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

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

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00038588

Enrollment

Registered

2026-01-06

Start date

2026-01-15

Completion date

Unknown

Last updated

2026-03-02

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

Conditions

ORPHA:881 Q96.0

Interventions

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

Eligibility

Sex/Gender

Female

Age

8 Years to 28 Years

Inclusion criteria

Inclusion criteria: - Children/adolescents/young adults with TS - Parents/caregivers of children with TS - Participation in the Empower DSD study of patients with TS - Consent has been obtained from affected individuals (aged 8 and above) and parents/caregivers. - Children between 8 and 13 years of age - Adolescents/young adults between >14 -18 years of age - young adults >18- 23 years of age - Parents/carers of affected children

Exclusion criteria

Exclusion criteria: - Lack of consent forms from participants (data subjects, parents/carers) - Participation in other studies dealing with training in DSD diagnosis - DSD diagnosis other than the one to be investigated

Design outcomes

Primary

Measure	Time frame
Quality of life of former participants at least two years after the training compare to that of the control group without training (measured using the KINDL questionnaire for children up to 18 years of age and the WHO-5 questionnaire for participants >18 years of age).	—

Secondary

Measure	Time frame
1) How does therapy adherence among training participants (children, adolescents, young adults with UTS) compare to the control group? 2) What influence does participation in the training have on coping/dealing with the diagnosis of UTS or the stress caused by the diagnosis? Survey using questionnaires	—

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: Mar 14, 2026