Actively Recruiting
Targeted Interventions for Successful Transition and Transfer of Adolescents With Inborn Errors of Metabolism to Adult Services
Led by University Children's Hospital, Zurich · Updated on 2024-08-06
20
Participants Needed
8
Research Sites
104 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
Targeted Interventions for Successful Transition and Transfer of Adolescents With Inborn Errors of Metabolism to Adult Services
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Patients with an inborn error of metabolism in the care of a specialized metabolic care unit
- Patients requiring specialized adult metabolic care
- Patients at least 14 years old
- Patients with a disease having at least one well-established biochemical or physical disease marker
You will not qualify if you...
- Patients with insufficient knowledge of German
- Patients with cognitive impairment preventing consent or participation
- Patients in an end-of-life situation
- Patients with diseases lacking well-established biochemical or physical disease markers
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 8 locations
1
University Childrens Hospital Vienna
Vienna, Austria, 1090
Actively Recruiting
2
University Hospital Vienna
Vienna, Austria, 1090
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3
University Childrens Hospital Basel
Basel, Switzerland
Actively Recruiting
4
University Hospital Basel
Basel, Switzerland
Actively Recruiting
5
University Childrens Hospital Bern
Bern, Switzerland
Actively Recruiting
6
University Hospial Bern
Bern, Switzerland
Actively Recruiting
7
University Childrens Hospital Zürich
Zurich, Switzerland, 8032
Actively Recruiting
8
University Hospital Zurich
Zurich, Switzerland
Actively Recruiting
How is the study designed?
Study Type
INTERVENTIONAL
Masking
NONE
Allocation
NA
Model
SINGLE_GROUP
Primary Purpose
SUPPORTIVE_CARE
Number of Arms
1
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