NCT03150069
MPS IVA, Morquio Disease, MPS - Mucopolysaccharidosis
The below information is taken directly from public registry websites such as ClinicalTrials.gov, EuClinicalTrials.eu, ISRCTN.com, etc. and has not been edited.
The present study seeks to interview women with Morquio A and Morquio B syndrome, to explore their concerns surrounding pregnancy and the impact of ERT on their perspectives, in comparison with the control group of Morquio B subjects for whom no ERT treatment exists.
Interviews will be conducted by a health psychologist, in-person or over the telephone. Data will be analyzed using MAXQDA 12.0 software and Grounded Theory. Differences in thematic trends between Morquio A subjects, for whom treatment exists, and a control group of Morquio B subjects, for whom there is no treatment, will be compared.
Female
15 Years to 100 Years
Yes
Interview
Observational
18
2017-05-10
2021-01-20
Decatur, Georgia, United States
1. Documented clinical diagnosis of either MPS IVA or MPS IVB, based on clinical signs and symptoms, documented reduced fibroblast or leukocyte GALNS enzyme activity or genetic testing confirming diagnosis.
2. Subject is at least 15 years old.
3. Subject is female.
4. Subject is fluent enough in English to complete in-depth interview with PI.
1. Patient has a clinically significant disease other than Morquio which would confound the effects of Morquio upon study variables.
2. Any condition that, in the view of the Investigator, places the patient at high risk of poor compliance or of not completing the study
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