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Development of Psycho-social Support Program for Patients and Caregivers of Myotonic Dystrophy Type 1

Not Applicable
Conditions
Myotonic dystrophy type 1
Registration Number
JPRN-UMIN000049167
Lead Sponsor
ational Center of Neurology and Psychiatry
Brief Summary

Not available

Detailed Description

Not available

Recruitment & Eligibility

Status
Complete: follow-up continuing
Sex
All
Target Recruitment
16
Inclusion Criteria

Not provided

Exclusion Criteria

1) If either the patient or caregiver is unwilling to participate in the study. 2) If patient has intake of antipsychotics and/or mood stabilizers. 3) If there was a change in dosage of antidepressants, anti-anxiety drugs, sleeping pills, Modafinil, and Ritalin in the past 12 months. However, intake of as-needed anxiolytics and sleeping pills are allowed. 4) If the caregiver is in caregiving profession. 5) Other cases in which the principal investigator or research co-investigator determines that the participant is not suitable for study participation.

Study & Design

Study Type
Interventional
Study Design
Not specified
Primary Outcome Measures
NameTimeMethod
Activity and Participation: Frenchay Activities Index
Secondary Outcome Measures
NameTimeMethod
Fatigue: Fatigue Severity Scale Daytime Sleepiness: Epworth Sleepiness Scale QOL: SF-12v2 Apathy: Apathy Evaluation Scale Caregiver version Cognitive ability: Mini Mental State Examination Caregiving burden: Zarit Caregiver Burden Short version
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