Short answer · Medically reviewed summary · Last updated: 2026-05-08
Retinopathy of Prematurity (ROP) is a common condition affecting the developing retinal blood vessels of premature infants, with an estimated incidence of 15,000 to 16,000 affected infants annually in the United States alone. While often categorized as a common complication of extreme prematurity rather than a rare disease in a clinical sense, the prevalence of severe, vision-threatening Retinopathy of Prematurity is significantly lower, impacting approximately 1,100 to 1,500 infants per year in the U.S.
2 people with Retinopathy Of Prematurity have shared their first-person experience on this question at DiseaseMaps.
What is the prevalence of Retinopathy Of Prematurity?
Prevalence of Retinopathy Of Prematurity: how many people are affected worldwide, differences by sex and region, with sources.
Retinopathy of Prematurity (ROP) is a common condition affecting the developing retinal blood vessels of premature infants, with an estimated incidence of 15,000 to 16,000 affected infants annually in the United States alone. While often categorized as a common complication of extreme prematurity rather than a rare disease in a clinical sense, the prevalence of severe, vision-threatening Retinopathy of Prematurity is significantly lower, impacting approximately 1,100 to 1,500 infants per year in the U.S. who require medical treatment.
What is the estimated incidence and prevalence of Retinopathy of Prematurity?
The incidence of Retinopathy of Prematurity is directly linked to gestational age and birth weight. According to the National Eye Institute, nearly all infants born before 28 weeks or weighing less than 1,250 grams are at risk of developing some stage of Retinopathy of Prematurity. While global prevalence varies based on the quality of neonatal care, it is estimated that approximately 50,000 children worldwide are blind due to Retinopathy of Prematurity. Accurate global prevalence is difficult to determine due to inconsistent screening protocols in developing nations and the potential for spontaneous regression of milder cases.
Are there demographic or gender differences in Retinopathy of Prematurity?
Research indicates that Retinopathy of Prematurity affects males and females with similar frequency. However, geographic and ethnic disparities are significant; higher rates are often observed in countries with rapidly expanding neonatal intensive care services where survival rates of very low birth weight infants are increasing, but screening infrastructure may be lagging. Retinopathy of Prematurity is strictly a pediatric condition, with onset occurring in the first few weeks of life, though the ocular consequences persist into adulthood.
Why is accurate data for Retinopathy of Prematurity challenging to capture?
Data collection for Retinopathy of Prematurity is complicated by several factors:
- Spontaneous Regression: Many cases of mild Retinopathy of Prematurity (Stage 1 or 2) resolve on their own without ever being formally diagnosed or recorded in national registries.
- Underdiagnosis: In regions with limited access to specialized pediatric ophthalmology, sub-clinical cases may remain undetected.
- Changing Standards: Advances in neonatal oxygen management and technology have shifted the incidence rates over the last two decades.
At DiseaseMaps.org, 15 community members have shared their experiences with Retinopathy of Prematurity, providing a vital real-world perspective on the long-term management of this condition that often escapes large-scale epidemiological datasets.
Next steps
- Consult a pediatric ophthalmologist if your child was born prematurely to ensure scheduled screening exams are completed.
- Monitor for warning signs of vision impairment as the child grows, such as poor fixation or strabismus.
- Join the DiseaseMaps.org community to connect with other families navigating the long-term outcomes of Retinopathy of Prematurity.
Medical disclaimer: This information is for educational purposes only and does not replace professional medical advice, diagnosis, or treatment; always seek the advice of your physician.
References
- National Eye Institute (NEI): Retinopathy of Prematurity information.
- NIH Genetic and Rare Diseases Information Center (GARD): ROP overview.
- Orphanet: Rare eye disease database and classifications.
- American Academy of Pediatrics (AAP): Guidelines for screening and treatment of ROP.
Retinopathy of prematurity (ROP) is a potentially blinding eye disorder that primarily affects premature infants weighing about 2¾ pounds (1250 grams) or less that are born before 31 weeks of gestation (A full-term pregnancy has a gestation of 38–42 weeks). The smaller a baby is at birth, the more likely that baby is to develop ROP. This disorder—which usually develops in both eyes—is one of the most common causes of visual loss in childhood and can lead to lifelong vision impairment and blindness. ROP was first diagnosed in 1942.
Frequently Asked Questions about Retinopathy of Prematurity
How many infants have retinopathy of prematurity?
Today, with advances in neonatal care, smaller and more premature infants are being saved. These infants are at a much higher risk for ROP. Not all babies who are premature develop ROP. There are approximately 3.9 million infants born in the U.S. each year; of those, about 28,000 weigh 2¾ pounds or less. About 14,000–16,000 of these infants are affected by some degree of ROP. The disease improves and leaves no permanent damage in milder cases of ROP. About 90 percent of all infants with ROP are in the milder category and do not need treatment. However, infants with more severe disease can develop impaired vision or even blindness. About 1,100–1,500 infants annually develop ROP that is severe enough to require medical treatment. About 400–600 infants each year in the US become legally blind from ROP.
Are there different stages of ROP?
Yes. ROP is classified in five stages, ranging from mild (stage I) to severe (stage V):
Stage I — Mildly abnormal blood vessel growth. Many children who develop stage I improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression.
Stage II — Moderately abnormal blood vessel growth. Many children who develop stage II improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression.
Stage III — Severely abnormal blood vessel growth. The abnormal blood vessels grow toward the center of the eye instead of following their normal growth pattern along the surface of the retina. Some infants who develop stage III improve with no treatment and eventually develop normal vision. However, when infants have a certain degree of Stage III and “plus disease” develops, treatment is considered. “Plus disease” means that the blood vessels of the retina have become enlarged and twisted, indicating a worsening of the disease. Treatment at this point has a good chance of preventing retinal detachment.
Stage IV — Partially detached retina. Traction from the scar produced by bleeding, abnormal vessels pulls the retina away from the wall of the eye.
Stage V — Completely detached retina and the end stage of the disease. If the eye is left alone at this stage, the baby can have severe visual impairment and even blindness.
Most babies who develop ROP have stages I or II. However, in a small number of babies, ROP worsens, sometimes very rapidly. Untreated ROP threatens to destroy vision.
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