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Upstate Active Clinical Trials

Study Title:

Participation in the Cystic Fibrosis Patient Registry

What is the purpose of the study? (in Layman's terms, please describe the study)

The goal of the Patient Registry is to collect data on individuals with cystic fibrosis (CF) or individuals with CF related disorders (e.g., CFTR-related metabolic syndrome, CFTR-related disorders) to better understand the illness and ultimately improve the care and survival of those with CF. The Patient Registry was established in 1966 as a means to monitor important trends in the CF population and to improve understanding, treatment, and survival.

Upstate Institutional Review Board (IRB) Number:

308871

Patient Age Group:

Children

Principal Investigator:

Christopher N Fortner, MD

Who can I contact for more information?

Name: Christine S Hall
Phone: 315-464-7608
Email: hallcs@upstate.edu

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