Prevent Blindness has announced the third annual Retinopathy of Prematurity (ROP) Awareness Week, Feb. 23 to March 1, as part of its ongoing ROP Education and Support Initiative. The campaign centers on expanding access to free educational materials and support tools that eyecare professionals can share with patients navigating an ROP diagnosis.
For practices caring for pediatric patients with a history of prematurity, the organization has developed a suite of downloadable and shareable resources, including fact sheets, web pages, social media graphics in English and Spanish, and medical expert and patient testimonial videos. Materials are designed to support conversations around long-term follow-up care and visual development after discharge from the neonatal intensive care unit (NICU).
The ROP Education and Support Initiative also offers clinician-focused guidance on building coordinated support systems for children with ROP as they transition from the NICU to community-based care. Resources are tailored for neonatologists, NICU nurses, pediatric ophthalmology and optometry providers, as well as professionals in early intervention, education, and school health settings. Prevent Blindness collaborates with parent and advocacy groups including Hand to Hold, National Coalition for Infant Health, and SPAN Parent Advocacy Network to broaden outreach and ensure materials reflect family needs.
During ROP Awareness Week, Prevent Blindness will release new patient-centered content across its Focus on Eye Health platforms, including a video episode featuring a NICU parent sharing her experience with an ROP diagnosis and ongoing care. Currently available, a podcast conversation with an adult living with ROP explores the role of education and support programs such as the ASPECT Patient Engagement Program. These stories are intended as supplemental tools for providers seeking to reinforce adherence to follow-up schedules and connect families with peer support.
In addition, the National Center for Children's Vision and Eye Health at Prevent Blindness is conducting parent focus groups to better understand care coordination, access barriers, and educational support gaps for children diagnosed with ROP. Eyecare professionals may share information about participation with eligible families—parents or guardians of children age 10 or younger who have spent time in the NICU and received an ROP diagnosis—by contacting evaluation@preventblindness.org.
Prevent Blindness is also partnering with NORC at the University of Chicago to analyze 2021–2023 Medicaid claims and encounter data to quantify diagnosed pediatric ROP cases nationally and regionally. The project aims to generate updated prevalence estimates, identify geographic variation, and evaluate screening, follow-up, and treatment utilization patterns. Findings are expected to inform best practices in parent education and continuity of care following NICU discharge.
Free ROP resources for clinicians and families are available here. OM