Does chronic pain change over time in children with duchenne muscular dystrophy?

NCT ID NCT07892196

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First seen Oct 23, 2026 · Last updated Oct 23, 2026

Summary

1\. Brief Summary This prospective observational study aims to evaluate the 6-month longitudinal changes in chronic pain, pain characteristics, coping strategies, and functional performance in children and adolescents aged 7 to 18 years diagnosed with Duchenne Muscular Dystrophy (DMD), with a primary focus on comparing ambulatory and non-ambulatory disease stages. Pediatric DMD patients followed at the University of Health Sciences Antalya Training and Research Hospital Neuromuscular Diseases Center will undergo comprehensive evaluations at baseline (Month 0) and at 6 months follow-up (Month 6). Pain parameters will be evaluated using the Adolescent Pediatric Pain Tool (APPT) to assess pain intensity, body localization, and sensory/affective/evaluative/temporal qualities, and the Brief Pain Inventory (BPI) 7-item Pain Interference Scale to determine pain interference with daily activities. Pain coping strategies will be assessed using the Pediatric Pain Coping Inventory (PPCI, adolescent and parent versions). Functional and motor assessments will include the North Star Ambulatory Assessment (NSAA), 6-Minute Walk Test (6MWT), stair climb/descend tests, Vignos and Brooke scales, handgrip dynamometry, manual muscle testing (MMT), and range of motion (ROM) and contracture evaluations, alongside anthropometrics and quality of life. The central hypotheses are that non-ambulatory patients experience chronic pain more frequently, with longer duration, greater intensity, and across a higher number of anatomical sites than ambulatory patients. Furthermore, the study hypothesizes that anatomical pain sites, pain-aggravating and pain-relieving factors, and pain coping mechanisms differ significantly between ambulatory and non-ambulatory stages.

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Study facts

What this study's own registry entry says, in plain language.

Participants

About 30 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jan 2026

Expected to finish

Dec 2026

An estimate. End dates often move.

Lead sponsor

A government agency

The lead sponsor is a government body.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Pediatric patients aged 7 to 18 years diagnosed with Duchenne Muscular Dystrophy who are regularly monitored and consecutively recruited during routine outpatient follow-up visits at the Neuromuscular Diseases Center of University of Health Sciences Antalya Training and Research Hospital, residing within the province of Antalya.

Ages

7 to 18 years

Sex

Male participants only

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Genetically confirmed diagnosis of Duchenne Muscular Dystrophy (DMD) * Aged 7 to 18 years * Residing in Antalya, Turkey (geographical restriction applied to minimize patient travel burden and prevent loss to follow-up over the 6-month observation period) * Intact hearing and vision capability sufficient to complete test instructions and self-report forms * Voluntary willingness to participate, with signed informed consent from parents/legal guardians and informed assent from the child Exclusion Criteria: * Bedridden status (inability to sit or maintain basic seated posture) * History of tracheostomy * Severe intellectual disability that precludes understanding instructions * Severe speech or communication impairment preventing self-report assessments * Presence of co-existing psychiatric or neurodevelopmental conditions (e.g., autism spectrum disorder, attention deficit hyperactivity disorder \[ADHD\])

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Conditions

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As listed by the trial registrant

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Contacts and locations

Locations

  • University of Health Sciences Antalya Training and Research Hospital, Neuromuscular Diseases Center

    RECRUITING

    Antalya, Antalya, 07100, Turkey (Türkiye)

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