Long-term study of CFTR modulator drugs in people with cystic fibrosis across Canada
Studies Trikafta and similar drugs in people with cystic fibrosis over time.
Plain-language title generated from the registry record
Registry title: Canadian Observational Study Evaluating the Long-term IMPACT of Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) Modulators on People With CF
Key facts
- Where
- Vancouver, CanadaSee the 2 sites
Where in Canada
- British Columbia Children's HospitalVancouver, CanadaTaking people
- St. Paul's HospitalVancouver, CanadaTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- University of British Columbia
- Trial code
- NCT05200429
- Record updated
- 20 January 2022
- Original description
This observational study intends to investigate health trends and data in cystic fibrosis patients all across Canada that are receiving modulator treatment so researchers can determine if CFTR treatments are effective over a long period of time and if so, which treatments work best for each individual. The study will collect clinical data from routine standard of care, patient reported outcomes via survey data and samples for a biobank.Read full original descriptionShow less
Canadian Observational Study Evaluating the Long-term IMPACT of CFTR (Can-IMPACT CF)
This observational study intends to investigate health trends and data in cystic fibrosis patients all across Canada that are receiving modulator treatment so researchers can determine if CFTR treatments are effective over a long period of time and if so, which treatments work best for each individual. The study will collect clinical data from routine standard of care, patient reported outcomes via survey data and samples for a biobank.
Inclusion: Prescribed a CFTR modulator therapy and planning to commence modulator therapy within 30 days OR planning to switch modulator therapies within 30 days; Participates in the Canadian Cystic Fibrosis Registry (CCFR); Informed consent by participant, or parent/legal guardian or assent.
Exclusion: Known contraindications to CFTR modulator therapy.