Experiences and Decision-Making for CFTR Modulators: A Qualitative Analysis
Clinical Trial
Offered by: 狈别尘辞耻谤蝉听颁丑颈濒诲谤别苍'蝉
Location: Delaware Valley
Trial Name
Experiences and Decision-Making for CFTR Modulators: A Qualitative Analysis
What is the trial about?
To explore the experience of patients and families in the CF Community related to highly effective CFTR modulator therapy (HEMT). These medications include: Ivacaftor (Kalydeco庐), Tezacaftor/Ivacaftor (Symdeko庐), and Elexacaftor/Tezacaftor/Ivacaftor (Trikafta庐).
Who can participate?
Children/adolescents with CF (ages 12-17); Adults with CF (18 and older); and Caregivers (e.g., parents or guardians) of individuals with CF.
What is involved?
If you provide consent for your participation, we will ask you to participate in a 30-60 minute phone or telehealth interview about your feelings and experiences around highly effective CFTR modulator therapy (HEMT). HEMT therapy includes the medications: Ivacaftor (Kalydeco庐), Tezacaftor/ivacaftor (Symdeko庐), and Elexacaftor/Tezacaftor/Ivacaftor (Trikafta庐). We are interested in hearing about your experience and perspective whether or not you take these medications.
We will also ask you to complete a background questionnaire, which includes personal questions related to you and your family.
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