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Note: This record shows only 22 elements of the WHO Trial Registration Data Set. To view changes that have been made to the source record, or for additional information about this trial, click on the URL below to go to the source record in the primary register.
Register: German Clinical Trials Register
Last refreshed on: 8 April 2024
Main ID:  DRKS00005276
Date of registration: 20/09/2013
Prospective Registration: Yes
Primary sponsor: Universitätsklinikum Freiburg
Public title: Extension and Evaluation of a Guidebook Application for Duchenne Muscular Dystrophy to empower affected Families
Scientific title: Extension and Evaluation of a Guidebook Application for Duchenne Muscular Dystrophy to empower affected Families
Date of first enrolment: 11/11/2013
Target sample size: 110
Recruitment status: Recruiting
URL:  http://drks.de/search/en/trial/DRKS00005276
Study type:  observational
Study design:  Allocation: ; Masking: ; Control: ; Assignment: ; Study design purpose: other  
Phase: 
Countries of recruitment
Austria Germany
Contacts
Name: Martin    Boeker
Address:  Stefan-Meier-Straße 26 79106 Freiburg Germany
Telephone: 0761 203-6700
Email: martin.boeker@uniklinik-freiburg.de
Affiliation:  Universitätsklinikum Freiburg, Department für Medizinische Biometrie und Medizinische Informatik, Institut für Medizinische Biometrie und Statistik
Name: Michael    Braun
Address:  Stefan-Meier-Straße 26 79104 Freiburg Germany
Telephone: 0761 203-6725
Email: michael.braun@uniklinik-freiburg.de
Affiliation:  Universitätsklinikum Freiburg, Department für Medizinische Biometrie und Medizinische Informatik, Institut für Medizinische Biometrie und Statistik
Key inclusion & exclusion criteria
Inclusion criteria: Parents of patients with Duchenne Muscular Dystrophy from the German-Austrian patient registry (https://www.treat-nmd.de/register/)
Patients with Duchenne Muscular Dystrophy from the German-Austrian registry
Access to an internet-enabled device (PC, laptop, tablet, smartphone, etc.) to fill in the online questionnaires
For the second and third survey: a Android smartphone

Exclusion criteria: Respondent is not able to understand the German language sufficiently
Limitations of vision, so that no questionnaire can be read


Age minimum: None
Age maximum: None
Gender: All
Health Condition(s) or Problem(s) studied

G71.0
Muscular dystrophy
G71.0
Intervention(s)
Group 1: Intervention using the mobile application "DMD Guide" with registered Duchenne patients and their relatives owning an Android smartphone (supply of health information)
Group 2: Control Group: registered Duchenne patients and their relatives without Android smartphone (no usage of the app "DMD Guide")
Primary Outcome(s)
Pre-test post-test difference of the self-efficacy of patients and their relatives after intervention with the mobile guidebook application (questionnaire survey)
Secondary Outcome(s)
Use of utility services (such as physician inquiries about topics from the guidebook or the regularity of examinations)
Number of installations and usability (e.g. usage of the advanced features, appointments using the app)
Secondary ID(s)
U1111-1147-9409
Source(s) of Monetary Support
Department für Medizinische Biometrie und Medizinische Informatik, Institut für Medizinische Biometrie und Statistik
Nachwuchsakademie Versorgungsforschung Baden-Württemberg, Abt. Allgemeinmedizin und Versorgungsforschung, Universitätsklinikum Heidelberg
Secondary Sponsor(s)
Ethics review
Status: Approved
Approval date: 20/08/2013
Contact:
ekfr.mpg@uniklinik-freiburg.de
Ethik-Kommission der Albert-Ludwigs-Universität Freiburg
+49-761-27072600
ekfr.mpg@uniklinik-freiburg.de
Results
Results available:
Date Posted:
Date Completed:
URL: http://drks.de/search/en/trial/DRKS00005276#studyResults
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