Communicative situation of children with neuromuscular diseases

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00030555

Enrollment

100

Registered

2024-03-07

Start date

2023-10-16

Completion date

Unknown

Last updated

2025-10-06

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

Conditions

G12 G71

Interventions

Group 1: Parents or the legal guardians of children with neuromuscular disease and their treating spreech and language pathologists are interviewed with several questionnaires once. Speech therapists

6 to 5

11 years or for the age group of 6

0 up to 10

11-year-old children with the "Fragebogen zur Beteiligung an Alltagskommunikation – FBA 6-10 – Version for legal guardians" (Neumann, Opitz & Blechschmidt, 2019). Motor skills are assessed with the G

11 years or for children aged 6

0 to 10

11 years with the "Questionnaire on Participation in Everyday Communication - FBA 6-10 - Version for Custo

Eligibility

Sex/Gender

All

Age

18 Months to 17 Years

Inclusion criteria

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

Exclusion criteria

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

Design outcomes

Primary

Measure	Time frame
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. There is only one date to collect data for the survey.	—

Secondary

Measure	Time frame
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.	—

Countries

Germany

Contacts

Public ContactJulia Schellen

Universität zu Köln, Humanwissenschaftliche Fakultät, Department Heilpädagogik und Rehabilitation, Pädagogik für Menschen mit Beeinträchtigungen der körperlichen und motorischen Entwicklung

julia.schellen@uni-koeln.de0221-47089552

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 4, 2026