CF Fibrocystic Disease of Pancreas Mucosis Mucovicidosis Pancreatic Fibrosis
Conditions
Interventions
None listed
Sponsors
Erasmus MC, Universitair Medisch Centrum Rotterdam
Eligibility
Age
18 Years to 99 Years
Inclusion criteria
Inclusion criteria: * Age 18 years or older * Male or female * Diagnosis of CF confirmed by sweat-test and/or DNA analysis and/or electrophysiology testing * Stable disease * Signed written informed consent.
Exclusion criteria
Exclusion criteria: *Placing on the High Urgency waiting list for lung transplantation
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| * Number of severe exacerbations; a severe exacerbation is defined as an exacerbation which requires treatment with intravenous antibiotic therapy, at the discretion of the treating lung physician. * Number of moderate exacerbations; a moderate exacerbation is defined as exacerbation which allows treatment with oral antibiotic therapy, at the discretion of the treating lung physician. | — |
Secondary
| Measure | Time frame |
|---|---|
| * Quality of life, assessed with EQ-5D and Cystic Fibrosis Questionnaire (CFQ). * Number and route of oral or intravenous antibiotic treatment * Number of emergency room visits in case of suspicion of pulmonary exacerbation * Compliance/adherence with self-testing spirometry assessed with a compliance survey | — |
Countries
Netherlands
Outcome results
None listed