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Prevent Blindness launches Retinopathy of Prematurity Education and Support Program as part of ROP Awareness Week
Prevent Blindness is offering a variety of free educational resources to the public and professionals
Prevent Blindness will roll out its “Retinopathy of Prematurity Education and Support Program,” as part of its first ROP Awareness Week, declared Feb. 26 to March 3, 2024.
According to a news release,1 Prevent Blindness is offering a variety of free educational resources to the public and professionals, including fact sheets, social media graphics, presented in both English and Spanish, online resources and a video series.
ROP 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.
“Diagnosing and treating ROP early is essential for preventing or lessening ROP-associated vision loss,” Jeff Todd, president and CEO of Prevent Blindness said in the news release. “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.”
Alarmingly, a new study from the Centers for Disease Control and Prevention National Center for Health Statistics2 shows the preterm birth rate of single births (delivery before 37 completed weeks of pregnancy) rose 12% in that time period, while early-term birth rates, at 37 to 38 completed weeks, rose 20%.
Moreover, in an effort to increase awareness and education around ROP, 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.
In addition, Prevent Blindness has produced an ROP webpage and a three-part series of comprehensive fact sheets, addressing questions, including what is ROP, how it is diagnosed and treated and what parents need to know about their child’s ROP and long-term vision health.
In a “Retinopathy of Prematurity” series, Jeff Todd, president and CEO of Prevent Blindness, interviews R.V. Paul Chan, MD, MSC, MBS, FACS, head of the 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.
Chan also is a volunteer member of the Prevent Blindness Board of Directors.
In addition, Prevent Blindness recently held a roundtable discussion titled “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.
According to the news release, the presentation 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 its YouTube playlist, containing educational content for both parents and professionals serving families with children with ROP in the Neonatal Intensive Care Unit.
In addition to Chan, the roundtable participants include:
- 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; and
- Jordan Pratt, an individual with ROP.
Blackdoctor.org, in partnership with Prevent Blindness, the National Eye Institute and the Children’s Vision Equity Alliance, 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 at 7 pm February 27.
The episode will be dedicated to the discussion of ROP as part of the “Seeing Eye to Eye: Celebrating Eye Health” Facebook Live series, featuring Charity Grannis, MD, pediatric ophthalmologist, Houston Eye Associates, and Gladdis.
