Targeted Interventions for Successful Transition and Transfer of Adolescents With Inborn Errors of Metabolism to Adult Services

Fit for Transfer: Targeted Interventions for Successful Transition and Transfer of Adolescents With Inborn Errors of Metabolism to Adult Metabolic Services

Status

Recruiting

Phases

Study type

Interventional

Source

ClinicalTrials.gov

Registry ID

NCT05413278

Enrollment

Registered

2022-06-10

Start date

2024-01-01

Completion date

2025-12-31

Last updated

2024-08-06

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Inborn Errors of Metabolism, Transition

Brief summary

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.

Interventions

BEHAVIORALBehavioral

Patient education, information and empowerment

Study design

Allocation

Intervention model

SINGLE_GROUP

Primary purpose

SUPPORTIVE_CARE

Masking

NONE

Eligibility

Sex/Gender

ALL

Age

14 Years to 25 Years

Healthy volunteers

Inclusion criteria

Patients * with an inborn error of metabolism in the care of a specialized metabolic care unit * 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

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

Design outcomes

Primary

Measure	Time frame	Description
Disease knowledge	change from baseline to 1 month	interview, semistructured

Countries

Austria, Switzerland

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Feb 4, 2026