Pregnancy With Morquio Syndrome - What Are Patients' Perspectives and Has ERT Changed Them?
Completed
Conditions studied: Morquio Disease, MPS - Mucopolysaccharidosis
In brief
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.
Key facts
- Study ID
- NCT03150069
- Run by
- Emory University
- People needed
- 18
- Starts
- 2017-05-10
- Expected to finish
- 2018-08-17
- Last updated by the study team
- 2021-01-20
Who can join
Age: 15 and older, up to 100. Sex: female. Healthy volunteers: accepted.
You may qualify if…
- 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.
- Subject is at least 15 years old.
- Subject is female.
- Subject is fluent enough in English to complete in-depth interview with PI.
You may not qualify if…
- Patient has a clinically significant disease other than Morquio which would confound the effects of Morquio upon study variables.
- Any condition that, in the view of the Investigator, places the patient at high risk of poor compliance or of not completing the study.
Where it is running
- Emory University — Decatur, Georgia, United States
Full record on ClinicalTrials.gov
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