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CF Organization of Care in the Era of Highly Effective Modulator.
Sponsor: Hospices Civils de Lyon
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 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.
Official title: Rethinking CF Organization of Care in the Era of Highly Effective Modulator: a Nationwide Research Program HORIZON.
Key Details
Gender
All
Age Range
6 Years - Any
Study Type
OBSERVATIONAL
Enrollment
5000
Start Date
2023-09-01
Completion Date
2027-06-30
Last Updated
2024-09-19
Healthy Volunteers
No
Conditions
Interventions
Intervention mapping
Intervention mapping is a model combining patient and professional questionnaires and a qualitative survey using individual interviews with patients and focus groups with professionals to identify the obstacles and levers to change at the level of patients, professionals and organisations.
Locations (1)
Groupement Hospitalier Est Pediatric CFcenter
Lyon, France