Myotonic Dystrophy
Conditions
Interventions
None listed
Sponsors
NHO Osaka Toneyama Medical Center
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: This study will include patients aged 18 years or older with confirmed diagnosis of DM1. Patients must meet all of the following criteria: 1) Patients diagnosed with DM1 based on genetic testing or clinical symptoms and family history 2) Patients who participated in a previous longitudinal study and have available information regarding cognitive assessment
Exclusion criteria
Exclusion criteria: Patients with congenital conditions, severe symptoms, severe visual impairment, severe hearing impairment, or other factors making research participation difficult will be excluded. Patients meeting any of the following criteria will not be enrolled in this study: 1) Congenital DM1 2) Severe symptoms, visual impairment, or hearing impairment making research participation difficult 3) If the principal investigator or co-investigator determines the patient is not suitable for participation in this study
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The course of change in cognitive function test scores at baseline, 5 years later, and 10 years later | — |
Secondary
| Measure | Time frame |
|---|---|
| The course of Changes in PRO scores measured by questionnaires, such as the QoL questionnaire, at baseline, 5 years, and 10 years later. Time of death after the initial assessment. Apathy scale Fatigue Severity Scale Epworth Sleepiness Scale Individualized Neuromuscular Quality of Life Questionnaire Myotonic Dystrophy Health Index | — |
Countries
Japan
Contacts
Public ContactHaruo Fujino
The University of Osaka Graduate School of Human Sciences
Outcome results
None listed