Cystic Fibrosis Patient Registry
| Possible benefit: | The medical care and treatment of CF can improve and patients with CF may live longer |
| Purpose of trial: | The purpose of the registry (list) is to collect data on people with cystic fibrosis (CF) to improve our understanding of the illness. The national Cystic Fibrosis Foundation (CFF) Patient Registry began in 1968 (www.cff.org ) |
| Drug/Device being tested: | None |
| Sponsoring Department: | Medicine - Pulmonary and Critical Care Medicine Division |
| SIU Faculty Physician: | Lanie E. Eagleton, M.D. |
| Sponsoring Company: | Cystic Fibrosis Foundation |
| Number of other sites in trial: | 115-plus CFF care centers |
| Type of patients needed: | Cystic fibrosis patients seen in SIU Cystic Fibrosis Clinic |
| Age: | All ages |
| Health status: | Patients with a diagnosis of cystic fibrosis |
| Number of visits required: | No specific visits are required to join the registry |
| Length of study involvement: | Ongoing |
| Tests to be performed: | None required. The registry is only for collecting data from those tests that are part of usual medical care |
| Contact Person: | Tricia Hopkins-Price, Ph.D. Contact Phone: 217-545-0187 Contact Email: phopkinsprice@siumed.edu |