CF Patient Registry

Participation in the Cystic Fibrosis Patient Registry

Protocol Description

The goal of the Cystic Fibrosis Patient Registry is to create a tool to study a broad population of individuals who have cystic fibrosis (CF) to better understand the illness and ultimately improve the care and survival of those with CF. Approximately 22,000 patients who have CF across the U.S. will participate in the patient registry, which is sponsored by the Cystic Fibrosis Foundation. Children’s Hospital of Pittsburgh of UPMC plans to enroll all patients with CF.

Eligibility Criteria

All pediatric and adult patients with cystic fibrosis who are being treated at the Antonio J. and Janet Palumbo Center at Children’s Hospital of Pittsburgh of UPMC.
Boys: Newborn to adult
Girls: Newborn to adult

Requirements

Permission to record information on the participant’s health into the database and completion of an annual questionnaire by participants or parent/guardians.

Status: Open for Enrollment

Source(s) of Support

Cystic Fibrosis Foundation

Primary Investigator

David M. Orenstein, MD

Contact Information

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