Cystic Fibrosis (CF) Foundation Registry

General Information Age Group Adults Status Active Protocol Number N/A Background Information The goal of the CFF Registry is to develop and maintain a database of CF patients that collects and stores de-identified patient medical information and other related information. This information is used to create CF care guidelines, assist care teams providing care to individuals with CF and guide quality improvement initiatives at care centers. Researchers also use the Patient Registry to study CF treatments and outcomes and to design CF clinical trials. Offered At Inova Heart and Vascular Institute Advanced Lung Disease and Transplant Clinic 3300 Gallows Road, Falls Church, VA 22042 Principal Investigator A. Whitney Brown, MD Eligibility Information Male or female patients aged ≥ 18 years Diagnosed with cystic fibrosis and/or cystic fibrosis related disorders (e.g. CFTR-related metabolic syndrome, CFTR-related disorder) Seen at Inova Fairfax Hospital Adult Cystic Fibrosis Center Ineligibility Information There are no specific exclusion criteria. All subjects must be the previously stated inclusion criteria. Contact Information Contact Name Melissa Bowen Contact Phone 703-776-5422 Contact Email Send Email Contact Information Contact Email Send Email