Understanding swallowing difficulties in myotonic dystrophy type 1
A Multidimensional Profile of Dysphagia in People Living With Myotonic Dystrophy Type 1 (plwDM1)
This study is trying to understand swallowing problems in people with myotonic dystrophy type 1 to see how muscle size and structure affect their ability to swallow.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 195 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | University College, London Academic / other |
| Locations | 1 site (London) |
| Trial ID | NCT05865483 on ClinicalTrials.gov |
What this trial studies
This observational study aims to investigate swallowing difficulties, known as dysphagia, in patients with myotonic dystrophy type 1 (DM1). It will assess the size and structure of the muscles involved in swallowing and how these factors relate to swallowing function and symptoms. Participants will undergo various tests, including ultrasound assessments, videofluoroscopy, and questionnaires to evaluate their swallowing symptoms and overall wellbeing. The goal is to enhance the understanding of dysphagia in DM1 to improve assessment and treatment strategies.
Who should consider this trial
Good fit: Ideal candidates for this study are adults aged 18 and older with a genetically confirmed diagnosis of myotonic dystrophy type 1 who can consume at least five sips of liquid by mouth.
Not a fit: Patients with conditions affecting swallowing muscle composition or function, such as a history of stroke or throat cancer, or those unable to eat or drink by mouth, may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to better management and treatment of dysphagia in patients with myotonic dystrophy type 1, potentially reducing life-threatening complications.
How similar studies have performed: While there have been studies on dysphagia in various conditions, this specific focus on myotonic dystrophy type 1 is relatively novel and untested.
Eligibility criteria
Show full inclusion / exclusion criteria
Participants with DM1 Inclusion: * ≥18 years of age * genetically confirmed of DM1 * able to eat \& drink at least five sips of liquid by mouth at one time. Exclusion: * any condition or treatment other than DM1 that potentially influences swallowing muscle composition or function (e.g., a history of stroke or throat cancer). * any patients who are pregnant * patients with congenital or childhood DM1 * patients who are not able to eat or drink anything by mouth.
Where this trial is running
London
- The National Hospital for Neurology & Neurosurgery, University College London Hospitals — London, United Kingdom (Recruiting)
Study contacts
- Principal investigator: Stuart Taylor, PhD — University College London & University College London Hospitals
- Study coordinator: Jodi Allen, MRes
- Email: jodi.allen.21@ucl.ac.uk
- Phone: 07760324254
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.