Pregnancy With Morquio Syndrome - What Are Patients' Perspectives and Has ERT Changed Them?
NCT03150069 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 18
Last updated 2021-01-20
Summary
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.
Conditions
- Morquio Disease
- MPS - Mucopolysaccharidosis
Interventions
- OTHER
-
Interview
In-person or telephone in-depth interview
Sponsors & Collaborators
- collaborator INDUSTRY
-
Emory University
lead OTHER
Eligibility
- Min Age
- 15 Years
- Max Age
- 100 Years
- Sex
- FEMALE
- Healthy Volunteers
- Yes
Timeline & Regulatory
- Start
- 2017-05-10
- Primary Completion
- 2018-08-17
- Completion
- 2018-08-17
Countries
- United States
Study Locations
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