Patient experience in retinitis pigmentosa and Choroideremia– a concept elicitation study in 17 patients based on qualitative interviews

Patient experience in retinitis pigmentosa and Choroideremia– a concept elicitation study in 17 patients based on qualitative interviews

Abstract Background Retinitis pigmentosa (RP) and Choroideremia (CHM) are rare inherited retinal diseases (IRDs) that can lead to severe visual impairment or blindness. Despite different underlying genetic pathways, they have many progression patterns in common, first affecting the more peripheral r...

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Bibliographic Details
Main Authors: Elke Rometsch, Per-Olof Thuresson, Noémie Hurst, Eckhart Eule, Isabel Bachmeier, Benoit Blanchard, José-Alain Sahel, Isabelle Audo
Format: Article
Language:English
Published: BMC 2025-08-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Patient-reported outcomes
Qualitative research
Interview
Retinitis pigmentosa
Choroideremia
Conceptual model
Online Access:https://doi.org/10.1186/s13023-025-03713-4
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https://doi.org/10.1186/s13023-025-03713-4

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