Status:
RECRUITING
CF Organization of Care in the Era of Highly Effective Modulator.
Lead Sponsor:
Hospices Civils de Lyon
Conditions:
Cystic Fibrosis
Eligibility:
All Genders
6+ years
Brief Summary
Recently, triple therapy has made it possible to extend access to these modulators to a large proportion of the patient population, with spectacular clinical benefits, provided the patient carries at ...
Detailed Description
The organisation of cystic fibrosis care in France, within the Muco-CFTR rare disease network, is based on 47 cystic fibrosis resource and competence centres (CRCMs), which bring together multidiscipl...
Eligibility Criteria
Inclusion
- 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
Exclusion
Key Trial Info
Start Date :
September 1 2023
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
June 30 2027
Estimated Enrollment :
5000 Patients enrolled
Trial Details
Trial ID
NCT06599892
Start Date
September 1 2023
End Date
June 30 2027
Last Update
September 19 2024
Active Locations (1)
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1
Groupement Hospitalier Est Pediatric CFcenter
Lyon, France