Observational study on the long-term effects of CFTR modulators in cystic fibrosis patients

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to evaluate health trends in cystic fibrosis patients across Canada who are receiving CFTR modulator treatments, specifically focusing on Trikafta. Researchers will collect clinical data from routine care, patient-reported outcomes through surveys, and biological samples for a biobank. The goal is to determine the long-term effectiveness of these treatments and identify which therapies work best for individual patients. By analyzing this data, the study seeks to provide insights into the impact of CFTR modulators on the health of cystic fibrosis patients over time.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* 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 Criteria:

* Known contraindications to CFTR modulator therapy

Where it's running

• British Columbia Children's Hospital
  Vancouver, British Columbia, Canada Recruiting
• St Paul's Hospital
  Vancouver, British Columbia, Canada Recruiting

Study contacts

• Principal investigator: Jonathan Rayment, MDCM — University of British Columbia
• Study coordinator: Alam Lakhani
• Email: alam.lakhani@cw.bc.ca
• Phone: 604-875-2345

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.