Studies Open for Enrollment

Quality of Life Assessment in Cystic Fibrosis After Lung Transplant

The purpose of this study is to assess the quality of life of cystic fibrosis (CF) patients as observed by their parents/guardians to help create parameters for future lung transplant referrals. Most CF patients are referred for lung transplant evaluation when their pulmonary function tests are below a certain point, yet quality of life also plays an important role. This will help to define quality of life factors that can be applied in future assessments.

Candidates
CF patients ages 6 to 18, who are presently not lung transplant candidates, will be asked to participate, along with their parents/guardians.
Boys: 6 to 18 years
Girls: 6 to 18 years

Requirements
The parent or guardian will be asked to complete a CF Quality-of-Life Questionnaire during the child’s routinely scheduled clinic visits. The child will also be asked to complete a questionnaire at the same time. Neither will take more than 15 minutes to complete.
Visits: 6
Duration: 36 months maximum

Status: Open for Enrollment

How to Participate
To get started, please contact either:
Elizabeth Hartigan, RN
Sandy Hurban, RN
Adrienne Horn, RN
1-877-296-9026

Additional Resources
Cystic Fibrosis

Principal Investigator
Geoffrey Kurland, MD
Pulmonary Medicine, Allergy and Immunology

Source of Support
Cystic Fibrosis Therapeutics, Inc.