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

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.

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Key information

Conditions

Transition Congenital, Hereditary, and Neonatal Diseases and Abnormalities Genetic Diseases, Inborn Inborn Errors of Metabolism Metabolic Diseases Metabolism, Inborn Errors Nutritional and Metabolic Diseases

Age range

14 year–25 year

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

University Childrens Hospital Vienna, Vienna, Austria

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Behavioral

Patient education, information and empowerment

Primary outcomes

Disease knowledge

Time frame: change from baseline to 1 month

interview, semistructured

Sponsors and collaborators

Lead sponsor

University Children's Hospital, Zurich

Other

Registry information

Official study title

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

Important dates

Study start: 2024
Primary completion: 2025
Study completion: 2025
First posted: Jun 10, 2022
Registry last updated: Aug 6, 2024

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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