Due in part to the Foundation’s groundbreaking work in drug discovery and development, many people with the disease can now expect to live into their 30s, 40s, and beyond. As the number of adult patients grows, the Foundation wants to ensure that it meets the unique needs of this population. Primary research with adults at different life stages was needed, but conducting it successfully presented some interesting challenges:

• HIPAA laws prevent us from contacting CF patients directly. So CFF and Edge crafted a grassroots, multi-modal outreach strategy that allowed patients to opt into the study through various websites, social media outlets, list serves, and referral emails.
• Infection control guidelines mean that CF patients cannot be in the same room, but we knew it was important to conduct focus groups where they could share experiences and bounce ideas off one another. So we held a series of virtual focus groups, using our online platform and webcams, and ensuring a more intimate experience where patients could talk to one another face-to-face.
• Many of the topics covered required sensitivity and understanding on the part of our RIVA trained moderators. We used a range of techniques to ensure that participants felt safe and could share their opinions with courage, authenticity, and dignity. The results of this study are enlightening, poignant, and will inform outreach and communications strategy moving forward.