The client is beginning to design a clinical trial protocol for a new phase I/II trial in a poorly understood, under diagnosed, and rare genetic disorder with no other current treatments. There are only about 50 families affected by the condition in Europe without any formal patient association. To meet enrolment targets, the client will have to make a compelling case on the value of their treatment to families and to establish trust.
The client needs to understand the burden of the disease, challenges, everyday life, preferences and hopes for the future of families affected by this genetic disease. The client’s compliance department felt it was best for the interviews to be done by an outside entity.
Designing a qualitative interview guide, co-created with patients, and aligned with the client’s needs
Setting up a quantitative screening survey for an appropriate recruitment process
Conducting exploratory semi-structured interviews with patients and with other stakeholders like KOLs, HCPs, caregivers, etc. when deemed necessary
Visualization of the patient pathway
Obtaining important insights into the patient pathway and detection of relevant health care gaps