Targeted Interventions for Successful Transition and Transfer of Adolescents With Inborn Errors of Metabolism to Adult Services
NCT ID: NCT05413278
Last Updated: 2024-08-06
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
NA
20 participants
INTERVENTIONAL
2024-01-01
2025-12-31
Brief Summary
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* 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.
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Detailed Description
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Conditions
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Study Design
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NA
SINGLE_GROUP
SUPPORTIVE_CARE
NONE
Study Groups
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Training
Patient education, empowerment, and information
Behavioral
Patient education, information and empowerment
Interventions
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Behavioral
Patient education, information and empowerment
Eligibility Criteria
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Inclusion Criteria
* requiring specialized adult metabolic care
* at least 14 years old
* with a disease for which at least one biochemical and / or physical parameter disease marker is well established .
Exclusion Criteria
* 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
14 Years
25 Years
ALL
No
Sponsors
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University Children's Hospital, Zurich
OTHER
Responsible Party
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Locations
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University Childrens Hospital Vienna
Vienna, , Austria
University Hospital Vienna
Vienna, , Austria
University Childrens Hospital Basel
Basel, , Switzerland
University Hospital Basel
Basel, , Switzerland
University Childrens Hospital Bern
Bern, , Switzerland
University Hospial Bern
Bern, , Switzerland
University Childrens Hospital Zürich
Zurich, , Switzerland
University Hospital Zurich
Zurich, , Switzerland
Countries
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Facility Contacts
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Other Identifiers
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Fit_for_transfer
Identifier Type: -
Identifier Source: org_study_id
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