A Multidimensional Profile of Dysphagia in People Living With Myotonic Dystrophy Type 1 (plwDM1)

Status: Completed
Location: See location...
Study Type: Observational
SUMMARY

The goal of this observational study is to learn about swallowing difficulties (dysphagia) in patients living with myotonic dystrophy type 1 (DM1). The main questions it aims to answer are: * whether the size and structure of the muscles involved in swallowing differ to those without the disease * how the size and structure of muscles may associate with swallowing function and swallowing symptoms in this group. Participants will undergo a range of tests including: * Ultrasound (US) assessment of the muscles involved in swallowing * An x-ray swallowing study (known as videofluoroscopy) * Assessment of swallowing symptoms, including questionnaires * Assessments of mobility, activity and breathing * Assessments of quality of life and wellbeing

Eligibility
Participation Requirements
Sex: All
Minimum Age: 18
Healthy Volunteers: t
View:

• ≥18 years of age

• genetically confirmed of DM1

• able to eat \& drink at least five sips of liquid by mouth at one time.

Locations
Other Locations
United Kingdom
The National Hospital for Neurology & Neurosurgery, University College London Hospitals
London
Time Frame
Start Date: 2023-07-03
Completion Date: 2024-08-23
Participants
Target number of participants: 177
Treatments
Participant group: mild disease
Muscle impairment rating score (MIRS) (Mathieu et al., 2001) 1-2 (n=30)
Participant group: moderate disease
Muscle impairment rating score (MIRS) (Mathieu et al., 2001) 3 (n=30)
Participant group: severe disease
Muscle impairment rating score (MIRS) (Mathieu et al., 2001) 4-5 (n=30)
Control group
No disease (n=60) age and sex-matched
Caregiver group
Spends at least one mealtime daily assisting with a person with DM1 already enrolled in the study. Expect ratio of 1:2 caregiver:participant (approx n=45)
Sponsors
Collaborators: Myotonic Dystrophy Support Group, United Kingdom, The National Brain Appeal, The National Hospital for Neurology and Neurosurgery, National Institute for Health Research, United Kingdom
Leads: University College, London

This content was sourced from clinicaltrials.gov