Actively Recruiting
CF Organization of Care in the Era of Highly Effective Modulator.
Led by Hospices Civils de Lyon · Updated on 2024-09-19
5000
Participants Needed
1
Research Sites
199 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
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 least one F508del mutation. The hypothesis is that the arrival of CFTRmHEs has considerably altered the way cystic fibrosis is managed, requiring a rethink of how the CRCMs are organised, and a redefinition of the practices and missions of professionals, as well as the patient-professional relationship.
CONDITIONS
Official Title
CF Organization of Care in the Era of Highly Effective Modulator.
Who Can Participate
Eligibility Criteria
You may qualify if you...
- 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.
You will not qualify if you...
- 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
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Groupement Hospitalier Est Pediatric CFcenter
Lyon, France
Actively Recruiting
Research Team
P
Philippe REIX, Professor
CONTACT
J
Julie HAESEBAERT, Professor
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
2
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