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 Schar Heart and Vascular
Advanced Lung Disease and Transplant Clinic
3300 Gallows Rd.
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.