Experiences and Decision-Making for CFTR Modulators: A Qualitative Analysis

Clinical Trial

Offered by: Nemours Children's
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®), Tezacaftor/Ivacaftor (Symdeko®), and Elexacaftor/Tezacaftor/Ivacaftor (Trikafta®).

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®), Tezacaftor/ivacaftor (Symdeko®), and Elexacaftor/Tezacaftor/Ivacaftor (Trikafta®). 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.