Development and evaluationof an interdisciplinary information and training program for children/young peoplewith Differences of Sex Development

Not Applicable

• Conditions: Q97; Q98; Q99; Q50-Q56; Q96; E25; Adrenogenital disorders; Turner syndrome; Other sex chromosome abnormalities, female phenotype, not elsewhere classified; Other sex chromosome abnormalities, male phenotype, not elsewhere classified

• Registration Number: DRKS00023096
• Lead Sponsor: Charité Universitätsmedizin Berlin

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Study Start: 2020-10-08
• Study Completion: 2023-05-31
• Results First Posted: 2023-06-10
• Last Update Posted: 19 August 2024

Recruitment & Eligibility

• Status: Complete
• Sex: All
• Target Recruitment: 634

Inclusion Criteria

Patients with Turner Syndrome, Klinefelter Syndrome, XX-/XY-DSD or Congenital adrenal hyperplasia (CAH); diagnosis confirmation by chromosome analysis, genetic test result, laboratory examination or clinical examination; children between 6-13 years; adolescents/young adults between 14-24 years; Parents/caregivers of concerned children/teenagers or young adults; professionals who conducted the training; peers who participated in the training as peer counselors or who have participated in the development of the training program; the informed consent of concerned persons (6 years and older) and parents/caregivers, professionals and peers is available.

Exclusion Criteria

no informed consent of participants ( patients, parents/caregivers, professionals, peers); participation in other studies dealing with training on DSD diagnosis, children between the ages of 6 and 7 without the cognitive development to participate in the educational programme

Study & Design

• Study Type: interventional
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Quality of life by questionnaire (KINDL, WHO-5, Cantrill ladder) at time t0 (before training), t2 (3 months after training), t3 (6 months after training)

Secondary Outcome Measures

Name	Time	Method
diagnosis relevant knowledge/ health knowledge, coping, disease burden, shame at times t0, t2, t3 by means of self-constructed questions, adapted CODI, BIS;<br><br>satisfaction with training program directly after the training on t1 (adapted ZUF-8)