Targeted Interventions for Successful Transition and Transfer of Adolescents With Inborn Errors of Metabolism to Adult Services
Recruiting now · Not applicable
Conditions studied: Transition, Inborn Errors of Metabolism
In brief
Main aims of this project are * To assess the baseline status-quo of transition and "fitness for transfer" in terms of information about the adult centre and team, organisational and practical skills (blood sampling and sending, how to make an appointment etc.), disease- and treatment-related knowledge, health-related quality of life (HrQoL), and self-efficacy in adolescnets with inborn errors of metabolism. Biochemical or physical parameters as appropriate for the respective diseases from 12 months before are documented. * To provide targeted, structured intervention modules (using available and, if necessary, adapted materials). * To measure the effects of these interventions on information about adult services short-term (within a month) and to re-assess all other baseline status-quo parameters long-term (6 and 12 months later). Psychological assessments will be complemented by biochemical or physical parameters as appropriate for the respective diseases and indicative for transition success.
Key facts
- Study ID
- NCT05413278
- Run by
- University Children's Hospital, Zurich
- People needed
- 20
- Starts
- 2024-01-01
- Expected to finish
- 2025-12-31
- Last updated by the study team
- 2024-08-06
Who can join
Age: 14 and older, up to 25. Sex: any. Healthy volunteers: not accepted.
You may not qualify if…
- Patients -
- with insufficient knowledge of the German
- with cognitive impairment to a degree that consent, and participation would be impossible
- in an end-of-life situation
- with a disease for which no biochemical and / or physical parameter disease marker is well established
Where it is running
- University Childrens Hospital Vienna — Vienna, Austria (enrolling)
- University Hospital Vienna — Vienna, Austria (enrolling)
- University Childrens Hospital Basel — Basel, Switzerland (enrolling)
- University Hospital Basel — Basel, Switzerland (enrolling)
- University Childrens Hospital Bern — Bern, Switzerland (enrolling)
- University Hospial Bern — Bern, Switzerland (enrolling)
- University Childrens Hospital Zürich — Zurich, Switzerland (enrolling)
- University Hospital Zurich — Zurich, Switzerland (enrolling)
Full record on ClinicalTrials.gov
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