Genetically determined metabolic diseases
Conditions
Interventions
Group 1: Guardians of children with genetically determined metabolic disorders are interviewed once by telephone about their disease experience, medication intake, and emergency management. Afterwards
Sponsors
Universität Leipzig
Eligibility
Sex/Gender
All
Age
No minimum to 21 Years
Inclusion criteria
Inclusion criteria: - Written consent of parents (or guardians) to participate in the study - Diagnosis of a genetic metabolic disorder - Sufficient knowledge of the German language to participate in the survey - Sufficient ability to understand the questions
Exclusion criteria
Exclusion criteria: - Refusal of participation by the patient or parents (or guardians) - No guardian present - Refusal of participation by the attending physician of the study centre - No fulfilment of the other inclusion criteria
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1) Parents' subjective perception of their disease experience, medication intake, and emergency management via telephone interview 2) Results of the medication analysis | — |
Countries
Germany
Contacts
Public ContactThilo Bertsche
ZAMS - Zentrum für Arzneimittelsicherheit, Universität und Universitätsklinikum Leipzig; Klinische Pharmazie, Institut für Pharmazie, Medizinische Fakultät, Universität Leipzig
Outcome results
None listed