Introduction

Our goal is to be the primary resource for comprehensive data on the incidence, management, and outcomes of infants with retinal disease cared for in Level IV NICU’s. In addition, as the majority of ELBW’s will receive eye screening and/or treatment at regional level 4 centers, we have the capacity to evaluate all screened infants.  Thus, while many infants with ROP ultimately resolve to full vascularization, the disease retains the potential to produce lifelong visual impairment including reduced visual acuity, decreased contrast sensitivity, and myopia.

Mission

To improve both short- and long-term outcomes (preserve vision) in prematurely born infants who are at risk of developing ROP.

Goals

• Define the current scope of practice with reference to ROP screening programs in preterm infants. We will report screening and follow-up variances across different IV NICU’s for primary and secondary screening criteria.
• Describe the current CHNC data relating to the incidence of ROP by gestational age accounting for confounders such as infection, growth, and illness in the era of tighter oxygen control.  
• Evaluate alternative screening models (e.g. G-ROP criteria) potential for greater sensitivity and specificity than current guidelines.
• Define characteristics of infants who have had regression of ROP and analyze their long-term (2-5 yr.) visual outcomes. Sites with long-term follow-up data will begin to prospectively evaluate visual outcomes and neurodevelopment.

Accomplishments

As one of the newest established focus groups, we have identified key members from both neonatology and ophthalmology departments across the country with interest and expertise in ROP. This includes physicians, nurse practitioners, and ROP coordinators.  

Sub-groups are working to analyze and present retrospective data from the CHNC database related to epidemiology, risk factors, and variability in diagnosis and management.  We are also designing surveys to be distributed across centers to establish screening practices, use of laser vs anti-angiogenic agents for treatment, and follow-up practices for infants after they are discharged from the NICU.