RecruitingNCT05284006

Non-invasive Functional Assessment and Pathogenesis of Morquio A

Non-invasive Functional Assessment and Pathogenesis of Morquio A (NIFAMA)


Sponsor

Nemours Children's Clinic

Enrollment

60 participants

Start Date

May 1, 2021

Study Type

OBSERVATIONAL

Conditions

Summary

Morquio A disease is a devastating systemic skeletal disease in which detailed progression and pathogenesis remain unknown. The proposed project aims to establish a non-invasive objective assessment that can be applicable to all ages of patients to better understand the progress of their disease and the most serious clinical problems (cervical instability and stenosis, tracheal obstruction, hyperlaxity of joints, hip dysplasia, and small lung capacity). The outcome of this project will lead to a more precise understanding of the skeletal/pulmonary compromise and defining clinical endpoints in this disease for future clinical trials of current or developing therapies.


Eligibility

Plain Language Summary

Simplified for easier understanding

This study monitors the functional abilities and disease progression in patients with Morquio A syndrome (also called MPS IVA), a rare inherited metabolic disorder that affects bones and connective tissue. The study aims to develop better ways to assess how the disease affects daily function. You may be eligible if: - You have a confirmed diagnosis of Morquio A syndrome (MPS IVA) - Your diagnosis is confirmed by enzyme activity testing showing less than 5% of normal activity You may NOT be eligible if: - There are no additional exclusion criteria listed for this study Talk to your doctor to see if this trial is right for you.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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Interventions

DIAGNOSTIC_TESTImaging, gait analysis, growth, joint test, hearing test, questionnaire, etc.

This study includes 15 major assessments: clinical assessment procedures; anthropometric measurements; activity of daily living and quality-of-life questionnaires; gait kinematics and kinetics analysis; pulmonary function tests (PFT); skeletal radiographs and dual-energy x-ray absorptiometry (DXA); MRI in cervical spine, temporal bones, and hip; computed tomography angiography (CTA) for tracheal obstruction; CT for temporal bones; anesthetic encounters; joint mobility; hearing function; biochemical analyses; and pathological analyses.


Locations(1)

Nemours Children's Health, Delaware Valley

Wilmington, Delaware, United States

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NCT05284006


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