Collaborative research protocol to define patient-reported experience measures of the cystic fibrosis care pathway in France: the ExPaParM study.
Dominique Pougheon BertrandA FanchiniP LombrailG RaultA ChansardN Le BretonC FrenodF MilonC Heymes-RoyerD SegretainM SilberS TherouanneJ HaesebaertC LlerenaP MichelQ ReynaudPublished in: Orphanet journal of rare diseases (2022)
The PREM questionnaires to be elaborated will have to undergo psychometric validation before being used by the actors of the CF network to assess the impact on the care pathways of quality approaches or new therapies available in cystic fibrosis. Trial Registration Registry: IRB00003888 - no. 20-700. Issue date: 06/09/2020.