About the Study

What is the study about?

Cystic fibrosis (CF) is a genetic disease that affects more than 30,000 individuals in the United States and their families. People with CF experience multiple physical and emotional symptoms, including shortness of breath, tiredness, pain, depression, and anxiety.

Palliative care is a medical specialty of experts who work to reduce suffering and improve quality of life for people with serious illnesses like CF. Although there is evidence for the benefits of palliative care in illnesses like cancer and heart disease, we do not know if it has the same benefits for people living with CF. The goal of this study is to test whether palliative care, delivered alongside usual CF care, improves outcomes for people with CF. 

What is involved?

Everyone who joins the study will answer a set of surveys every three months for 15 months. The first takes about 45 minutes to complete. After that, surveys take about 20 minutes. You can complete the surveys online.

Adults with CF who join the study will be assigned to one two groups at random, like a coin flip. Both groups will receive their CF clinic care as usual. In one group, each patient also will meet four times with a palliative care expert. Those appointments will be in the clinic or by video.

In both group, patients can invite a caregiver to join the study with them. Caregivers complete surveys too.

People in the study earn a $20 gift card for each survey they complete, up to $120 for all six.

How can I learn more?

Five CF clinics in North America are part of this study:

  • Emory University, Atlanta, GA
  • University of Alabama-Birmingham
  • University of North Carolina, Chapel Hill
  • University of California, San Diego
  • St. Michael’s Hospital, Toronto, ON

If you are an adult (age 18 or older) who receives care from one of these CF clinics, you might be eligible for this study. Contact our study team at InSPIReCF [at] emory [dot] edu to learn more.

Note: Due to COVID-19, all study operations are currently being conducted remotely (by email, phone, or video chat).