Communicative situation of children with neuromuscular diseases

Recruiting

• Conditions: G12; G71; Spinal muscular atrophy and related syndromes; Primary disorders of muscles

• Registration Number: DRKS00030555
• Lead Sponsor: niversität zu Köln, Humanwissenschaftliche Fakultät, Prof. Dr. Jens Boenisch

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Study Start: 2024-03-07
• Last Update Posted: 19 August 2024

Recruitment & Eligibility

• Status: Recruiting
• Sex: All
• Target Recruitment: 100

Inclusion Criteria

Children and youth aged 1.6 to 17.11 years with a neuromuscular disease and consent of their legal guardians.

Exclusion Criteria

Children and youth aged younger or older with a neuromuscular disease. Children without signed consent of their legal guardians.

Study & Design

• Study Type: observational
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
The primary outcome is communicative participation. Pragmatic communication skills are crucial, i.e. how the child can communicate in everyday situations. This is a sub-aspect of the quality of life outcome. This is recorded using the FOCUS-G or the FBA6-10 questionnaire for parents/ legal guardians and speech and language pathologists. <br>There is only one date to collect data for the survey.

Secondary Outcome Measures

Name	Time	Method
The self-created questionnaire is used to record which provision of remedial and assistive devices have already been prescribed. This should provide information whether there is an adequate, over- or under-provision of remedial and assistive devices for communication.