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Updated: Jul 16, 2025

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Development of a joint set of database parameters for the EU-ROP and Fight Childhood Blindness! ROP Registries

Caroline Catt1,2, Johanna M Pfeil3, Daniel Barthelmes2,4

  • 1Department of Ophthalmology, The Children's Hospital at Westmead, Westmead, New South Wales, Australia carolinecatt@hotmail.com.

The British Journal of Ophthalmology
|September 13, 2023
PubMed

Insights

A minimal dataset for retinopathy of prematurity (ROP) treatment is proposed to track outcomes. This standardized approach aims to improve patient care and enable consistent ROP research.

Area of Science:

  • Ophthalmology
  • Neonatology
  • Clinical Data Management

Background:

  • The incidence of retinopathy of prematurity (ROP) is rising, with expanding treatment options lacking comprehensive safety data.
  • There is a need for standardized data collection to effectively monitor and compare ROP treatment outcomes.

Purpose of the Study:

  • To define a minimal, patient-centered dataset for ROP treatment.
  • To establish a feasible data set for clinical practice and collaborative outcome tracking.
  • To improve patient outcomes through standardized ROP treatment research.

Main Methods:

  • A multinational collaboration of clinicians and a patient representative was formed.
  • Expertise in ROP and registry development guided the data set creation.
  • Focus on real-world, patient-centered, minimal, and feasible parameters for routine clinical practice.

Main Results:

  • Recommended data points include patient demographics, comorbidities, ROP status, and treatment details.
  • Collection of ophthalmic and systemic complications, and short/long-term outcomes is advised.
  • Includes data on retreatment episodes and follow-up examinations for comprehensive tracking.

Conclusions:

  • The proposed parameters should be adopted in ROP registries and studies.
  • Standardization will reduce variability in reports and allow meaningful comparisons.
  • These parameters form the foundation for the EU-ROP and Fight Childhood Blindness! ROP Registries.
Abstract

Keywords:
Child health (paediatrics)RetinaTreatment LasersTreatment SurgeryVision

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