Evaluation of the effectiveness of a new joint transition consultation for rare genetic diseases ZSEA - Human Genetics

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00030303

Enrollment

100

Registered

2022-09-15

Start date

2023-03-01

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

Rare Diseases

Interventions

Group 1: Patients with rare diseases will be interviewed before and after the transition consultation about its benefits using a mixed-methods approach consisting of a questionnaire and a semi-structu

Eligibility

Sex/Gender

All

Age

16 Years to 30 Years

Inclusion criteria

Inclusion criteria: Presence of a rare disease and participation in joint transition consultation of the ZSEA and Human Genetics.

Exclusion criteria

Exclusion criteria: No rare disease and no participation in transition consultation.

Design outcomes

Primary

Measure	Time frame
The aim of this study is to examine the effectiveness of the joint transition consultation of the ZSEA and the Institute of Human Genetics of the University Hospital RWTH Aachen in terms of its benefit for the patients from the very beginning and to evaluate the work of the doctors in charge. Furthermore, we aim to create a basis for a possible expansion to other university centres. The effectiveness will be assessed before and after the transition consultation by means of questionnaires and interviews.	—

Measure

Time frame

The aim of this study is to examine the effectiveness of the joint transition consultation of the ZSEA and the Institute of Human Genetics of the University Hospital RWTH Aachen in terms of its benefit for the patients from the very beginning and to evaluate the work of the doctors in charge. Furthermore, we aim to create a basis for a possible expansion to other university centres. The effectiveness will be assessed before and after the transition consultation by means of questionnaires and interviews.

—

Secondary

Measure	Time frame
The evaluation project is planned for three years.	—

Countries

Germany

Contacts

Public ContactMiriam Elbracht

Uniklinik RWTH AachenHumangenetik

mielbracht@ukaachen.de0241 80-88013

Outcome results

None listed

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