Evaluation of the effectiveness of a new joint transition consultation for rare genetic diseases ZSEA - Human Genetics
Recruiting
- Conditions
- Rare Diseases
- Registration Number
- DRKS00030303
- Lead Sponsor
- Stiftung Universitätsmedizin Aachen
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Recruiting
- Sex
- All
- Target Recruitment
- 100
Inclusion Criteria
Presence of a rare disease and participation in joint transition consultation of the ZSEA and Human Genetics.
Exclusion Criteria
No rare disease and no participation in transition consultation.
Study & Design
- Study Type
- observational
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method 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.<br>The effectiveness will be assessed before and after the transition consultation by means of questionnaires and interviews. <br><br>
- Secondary Outcome Measures
Name Time Method The evaluation project is planned for three years.