Publications
Research outputs
Publications from the Save Sight Registries and related research, across all of our condition specific projects. Use the filters to narrow the list by year, publication type, registry or author.
1.
Catt, Caroline; Pfeil, Johanna M; Barthelmes, Daniel; Gole, Glen A; Krohne, Tim U; Wu, Wei-Chi; Kusaka, Shunji; Zhao, Peiquan; Dai, Shuan; Elder, James; Heckmann, Matthias; Stack, Jacqueline; Khonyongwa-Fernandez, Gigi; Stahl, Andreas
Development of a joint set of database parameters for the EU-ROP and Fight Childhood Blindness! ROP Registries Journal Article
In: British Journal of Ophthalmology, vol. 108, no. 7, pp. 1030–1037, 2024, ISSN: 1468-2079.
Abstract | Links | Tags: British Journal of Ophthalmology, Fight Childhood Blindness
@article{Catt2023,
title = {Development of a joint set of database parameters for the EU-ROP and Fight Childhood Blindness! ROP Registries},
author = {Caroline Catt and Johanna M Pfeil and Daniel Barthelmes and Glen A Gole and Tim U Krohne and Wei-Chi Wu and Shunji Kusaka and Peiquan Zhao and Shuan Dai and James Elder and Matthias Heckmann and Jacqueline Stack and Gigi Khonyongwa-Fernandez and Andreas Stahl},
doi = {10.1136/bjo-2023-323915},
issn = {1468-2079},
year = {2024},
date = {2024-07-00},
journal = {British Journal of Ophthalmology},
volume = {108},
number = {7},
pages = {1030–1037},
publisher = {BMJ},
abstract = {Background/Aims The incidence of retinopathy of prematurity (ROP) is increasing and treatment options are expanding, often without accompanying safety data. We aimed to define a minimal, patient-centred data set that is feasible to collect in clinical practice and can be used collaboratively to track and compare outcomes of ROP treatment with a view to improving patient outcomes. Methods A multinational group of clinicians and a patient representative with expertise in ROP and registry development collaborated to develop a data set that focused on real-world parameters and outcomes that were patient centred, minimal and feasible to collect in routine clinical practice. Results For babies receiving ROP treatment, we recommend patient demographics, systemic comorbidities, ROP status, treatment details, ophthalmic and systemic complications of treatment, ophthalmic and neurodevelopmental outcomes at initial treatment, any episodes of retreatment and follow-up examinations in the short and long-term to be collected for use in ROP studies, registries and routine clinical practice. Conclusions We recommend these parameters to be used in registries and future studies of ROP treatment, to reduce the variation seen in previous reports and allow meaningful assessments and comparisons. They form the basis of the EU-ROP and the Fight Childhood Blindness! ROP Registries.},
keywords = {British Journal of Ophthalmology, Fight Childhood Blindness},
pubstate = {published},
tppubtype = {article}
}
Background/Aims The incidence of retinopathy of prematurity (ROP) is increasing and treatment options are expanding, often without accompanying safety data. We aimed to define a minimal, patient-centred data set that is feasible to collect in clinical practice and can be used collaboratively to track and compare outcomes of ROP treatment with a view to improving patient outcomes. Methods A multinational group of clinicians and a patient representative with expertise in ROP and registry development collaborated to develop a data set that focused on real-world parameters and outcomes that were patient centred, minimal and feasible to collect in routine clinical practice. Results For babies receiving ROP treatment, we recommend patient demographics, systemic comorbidities, ROP status, treatment details, ophthalmic and systemic complications of treatment, ophthalmic and neurodevelopmental outcomes at initial treatment, any episodes of retreatment and follow-up examinations in the short and long-term to be collected for use in ROP studies, registries and routine clinical practice. Conclusions We recommend these parameters to be used in registries and future studies of ROP treatment, to reduce the variation seen in previous reports and allow meaningful assessments and comparisons. They form the basis of the EU-ROP and the Fight Childhood Blindness! ROP Registries.