New Initiative from Prevent Blindness Launched to Provide Free Educational Resources on Retinopathy of Prematurity (ROP), Including Expert and Parent Testimonial Videos, a Dedicated Website, Fact Sheets and Social Media Graphics
Prevent Blindness has launched the new “Retinopathy of Prematurity Education and Support Program,” as part of its first ROP Awareness Week, declared Feb. 26 – March 3, 2024. The group is offering a variety of free educational resources to the public and professionals, including fact sheets, social media graphics in English and Spanish, dedicated online resources, and a new video series.
Retinopathy of Prematurity is a condition caused by abnormal development of retinal blood vessels, occurring as a complication of preterm birth and/or low birth weight. ROP may lead to partial or complete vision loss if the condition is severe, and the retina detaches.
Retinopathy of Prematurity Resources at Prevent Blindness
Alarmingly, a new study from the Centers for Disease Control and Prevention National Center for Health Statistics, “Shifts in the Distribution of Births by Gestational Age: United States, 2014–2022,” shows the preterm birth rate of single births (delivery before 37 completed weeks of pregnancy) rose 12 percent in that time period, while early-term birth rates, at 37 to 38 completed weeks, rose 20 percent.
To help address the need for ROP awareness and education, Prevent Blindness convened leading organizations in the parent support, education, and advocacy arenas to partner on creating the ROP Education and Support Program. Working with partners Hand to Hold, the National Coalition for Infant Health, and the SPAN Parent Advocacy Network, Prevent Blindness led the creation of a variety of expert-approved resources to educate parents and professionals on ROP. The ROP Education and Support Program and ROP Awareness Week is supported by funding from Regeneron.
Prevent Blindness offers a dedicated ROP webpage, along with a three-part series of comprehensive fact sheets, addressing questions such as:
- What is Retinopathy of Prematurity (ROP)?
- How is ROP Diagnosed and Treated?
- What Do I Need to Know About My Child’s ROP and Lifelong Vision Health?
In the Prevent Blindness Focus on Eye Health Expert Series, “Retinopathy of Prematurity,” Jeff Todd, president and CEO of Prevent Blindness, interviews R.V. Paul Chan, MD, MSC, MBA, FACS, Head, Department of Ophthalmology and Visual Sciences, The John H. Panton Professor of Ophthalmology, University of Illinois at Chicago College of Medicine, and Director, Pediatric Retina and Retinopathy of Prematurity Service, Illinois Eye and Ear, UI Health. Dr. Chan is also a volunteer member of the Prevent Blindness Board of Directors.
Prevent Blindness recently conducted a roundtable discussion, “Your Child and Retinopathy of Prematurity,” with a pediatric ophthalmologist, psychologist, ROP nurse, child and young adult patients with ROP, parents of children with ROP, and family support organizations. This discussion has been adapted into a video series on topics that include ROP diagnosis and treatment, caregiving and family support, and lifelong vision health of ROP patients. The series is available on the Prevent Blindness website and Prevent Blindness YouTube playlist, containing educational content for both parents and professionals serving families with children with ROP in the Neonatal Intensive Care Unit.
Participants of the roundtable include Dr. Chan, along with:
- Tiffany Gladdis, PsyD, Division of Developmental and Behavioral Health, Section of Psychology, Division of Neonatology, Medical Director, Office of Equity and Diversity, Children’s Mercy Kansas City, Associate Professor, Department of Pediatrics, UMKC School of Medicine
- Kelli Kelley, Founder and CEO, Hand to Hold
- Olachi Mezu-Ndubuisi, MD, OD, Associate Professor of Pediatrics and Ophthalmology, Flaum Eye Institute at the University of Rochester
- Claudia Perez, BSN, RN, COA, ROP Nurse Coordinator for the Division of Ophthalmology, Ann & Robert H. Lurie Children’s Hospital of Chicago
- Tracy Pella, Co-Founder and President, Connected Forever, and her son Cooper Pella
- Nicole Pratt, MAT, BS, Family and Professional Training Director, Leaders Empowered as Advocates with Dignity (LEAD) Project Director, SPAN Parent Advocacy Network
- Jordan Pratt, an individual with ROP
During ROP Awareness Week, on Tuesday, Feb. 27, at 7 p.m. ET, Blackdoctor.org will stream a new episode dedicated to the discussion of ROP as part of the “Seeing Eye to Eye: Celebrating Eye Health” Facebook Live series. The episode features Charity Grannis, MD, Pediatric Ophthalmologist, Houston Eye Associates, and Dr. Gladdis. This series is a partnership with Blackdoctor.org, Prevent Blindness, the National Eye Institute, and the Children’s Vision Equity Alliance.
“Diagnosing and treating ROP early is essential for preventing or lessening ROP-associated vision loss,” said Mr. Todd. “The ultimate goal for our new ROP program is to educate and offer much-needed resources for families of children with ROP and support the healthcare professionals who care for premature children to help prevent unnecessary vision impairment.”
Contact Prevent Blindness at [email protected] for more information.
Download a copy of the inaugural ROP Awareness Week media release.
