The Impacts of Caregiving for Patients with X-Linked Retinitis Pigmentosa (XLRP): Findings from the EXPLORE XLRP-2 Study
Some caregivers reported employment and mental health impacts in this study. However, despite many hours spent per week caring for patients with XLRP, the surveys did not reflect the expected burden experienced by caregivers, highlighting the need for further research in this field.
Authors
- J van Denderen
- Eeva-Marja Sankila
- Katarína Štingl (ORCID: https://orcid.org/0000-0002-8132-911X)
- Tom Denee (ORCID: https://orcid.org/0000-0002-0150-2091)
- Ygal Rotenstreich (ORCID: https://orcid.org/0000-0003-2366-1779)
- Andrew Lotery (ORCID: https://orcid.org/0000-0001-5541-4305)
- Francesco Parmeggiani (ORCID: https://orcid.org/0000-0002-9296-0986)
- Dominique Brémond‐Gignac (ORCID: https://orcid.org/0000-0002-3563-5482)
- Marjolein Lahaye
- Enrique Rodríguez-de-la-Rúa-Franch (ORCID: https://orcid.org/0000-0001-7630-4252)
- Nabin Paudel (ORCID: https://orcid.org/0000-0003-1583-9856)
- Markus Ritter (ORCID: https://orcid.org/0000-0003-1406-8340)
- Katalin Pungor (ORCID: https://orcid.org/0000-0003-4679-2050)
- Avril Daly
- Michel Weber (ORCID: https://orcid.org/0000-0002-2346-6618)
Institutions
- Hôpital Necker-Enfants Malades (FR)
- University of Helsinki (FI)
- Inserm (FR)
- Tel Aviv University (IL)
- University of Ferrara (IT)
- Université Paris Cité (FR)
- Sheba Medical Center (IL)
- Helsinki University Hospital (FI)
- Instituto de Salud Carlos III (ES)
- Centre Hospitalier Universitaire de Nantes (FR)
- Hospital Universitario Virgen Macarena (ES)
- Centre de Recherche des Cordeliers (FR)
- Assistance Publique – Hôpitaux de Paris (FR)
- Janssen (Germany) (DE)
- Regione del Veneto (IT)
- STZ eyetrial (DE)
- Janssen (Netherlands) (NL)
- University of Southampton (GB)
- Medical University of Vienna (AT)
- University of Tübingen (DE)
- Nantes Université (FR)
Publication Details
- Journal
- Advances in Therapy
- Published
- 2025-04-29
- DOI
- https://doi.org/10.1007/s12325-025-03196-6
- Citations
- 1
- Primary Topic
- Retinal Diseases and Treatments
- Type
- article
- Field-Weighted Citation Impact
- 1.71