Understanding Fabry Disease Therapy Choices Through the Eyes of the Patients (NCT04804566) | Clinical Trial Compass
CompletedNot Applicable
Understanding Fabry Disease Therapy Choices Through the Eyes of the Patients
United States44 participantsStarted 2023-03-01
Plain-language summary
The objective of this study is to increase the understanding surrounding the choices presented to patients and families impacted by Fabry disease.
Who can participate
Age range18 Years
SexALL
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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion Criteria:
* Participant must be a person with Fabry disease who is 18 years or older or the parent/legal guardian of a living person with Fabry disease who is under the age of 18 years or who are 18 years and older who are unable to answer for themselves.
* Confirmed diagnosis of Fabry disease with written proof of disease provided
* Must have a genetic mutation that is amenable to oral therapy
* Resident of Germany, the U.K or the U.S.
* Able to read, write and communicate in German, or English.
* Able to grant informed consent
* Willing to participate in a 50 to 60-minute telephone interview, including follow up questions (if necessary) and information regarding adverse events (if necessary).
Exclusion Criteria:
* Inability to meet any of the inclusion criteria
What they're measuring
1
Patterns and Trends that Provide Evidence and Context for the Treatment Choices and Experiences of Those with Fabry Disease