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

Inclusion Criteria1

  • Patients affected by MPS IVA. The diagnosis of MPS IVA is confirmed by deficient enzyme activity of \< 5% of normal activity level as measured in plasma or leukocytes.

Exclusion Criteria1

  • No

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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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