Organizing care for cystic fibrosis patients using new treatments

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 examines how the introduction of highly effective CFTR modulators has transformed the management of cystic fibrosis in France. It focuses on the organization of care provided by cystic fibrosis resource and competence centers (CRCMs), which offer multidisciplinary support to patients. The study aims to redefine the roles of healthcare professionals and the patient-professional relationship in light of these new treatment options. By analyzing the experiences of patients and healthcare providers, the study seeks to improve care pathways and outcomes for cystic fibrosis patients.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Patients aged 6 and over with cystic fibrosis treated with CFTRmHE for at least 12 months
* Patients aged over 6 years with cystic fibrosis not eligible for CFTRmHE treatment
* Families of patients under 18 years of age
* Professionals working in a CRCM for more than 12 months, physiotherapists and community nurses involved in the management of cystic fibrosis.

Exclusion Criteria \* :

* Refusal to participate
* Persons deprived of their liberty by judicial or administrative decision
* Persons under psychiatric care
* Adults under legal protection (guardianship, curatorship)
* Persons not affiliated to a social security scheme or beneficiaries of a similar scheme

Where it's running

• Groupement Hospitalier Est Pediatric CFcenter
  Lyon, France Recruiting

Study contacts

• Principal investigator: Philippe REIX, Professor — Hospices Civils de Lyon
• Study coordinator: Philippe REIX, Professor
• Email: philippe.reix@chu-lyon.fr
• Phone: 04 27 85 50 42

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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.