Understanding Dysphagia in Myotonic Dystrophy Type 1 Version 1.1
Research type
Research Study
Full title
Understanding Oro-Pharyngeal Dysphagia in Myotonic Dystrophy Type 1 (DM1)
IRAS ID
271285
Contact name
Christina Smith
Contact email
Sponsor organisation
University College London Hospital Trust
Clinicaltrials.gov Identifier
Not applicable, UCL Data Protection Registration
Duration of Study in the UK
0 years, 4 months, 17 days
Research summary
This study aims to understand how swallowing problems (oropharyngeal dysphagia) present in individuals living with Myotonic Dystrophy Type 1 (DM1). It also aims to understand the relationship between swallowing difficulties and other aspects of DM1 such as the difficulties with movement and difficulties with breathing.
We will address our research aims by accessing a secure database of clinical information which has been collected by the clinician leading this application. The database contains clinical information relating to individuals with DM1 who have attended the Neuromuscular Complex Care Centre (NMCCC) at The National Hospital for Neurology and Neurosurgery (University College London Hospitals) for their routine clinical care since May 2015. Information on the database includes (but is not limited to) outcomes of swallowing x-rays, breathing assessments and tests of muscle strength.
The information on the database will be fully anonymised by the lead clinician before using it for research purposes to ensure patient identity is protected. Once data anonymisation is complete we will use the swallowing x-ray results to describe the swallowing problems that occur in DM1. We will then use statistical methods (linear regression analysis and ANOVA) to understand the relationship between swallowing and other important clinical aspects of DM1.
The outcomes of the study will help to improve healthcare practices by enabling clinicians and patients to recognise the signs of swallowing difficulty as early as possible. It will help to inform clinical assessment protocols but also provide a tool from which to consider further research.
REC name
N/A
REC reference
N/A