ROP is one of the leading causes of blindness in children despite 60 years of research. Doctors and patients alike are seeking to understand the causes and impact of this condition and to find appropriate treatments and to understand when treatment is most effective.
Information about ROP is now available widely online. Hospitals are developing patient education materials; editors of parenting newsletters are publishing articles; people with ROP are sharing their personal stories. Support groups allow people to share information and work together to devise coping strategies. Doctors and nurses are also using the Internet to share information.
The links on this page lead to patient information, guidelines for screening and treatment, and commentary on the impact of ROP and coping strategies. Links have been checked for accuracy and updated as of June 4, 2003. All links will open in a new window.
Retinopathy of Prematurity (See/Hear Newsletter)
Kate Moss provides information for parents about ROP, risk factors, and treatment.
Retinopathy of Prematurity (Dr. Scott Richards
This page provides information about what ROP is, the stages of ROP, risk factors, treatment, late complications, and email-based support groups.
Grand Rapids Ophthalmology - Patient Education
This page includes a search box that provides access to information about eye condiThe ROP section explains what ROP is, research regarding the cause, chances for premature babies of developing ROP, and treatments.
Retinopathy of Prematurity factsheet
Here is information from the Royal National Institute for the Blind. The process of normal early retinal development is explained.
R.L.F./R.O.P (Special Education Exchange)
This page is another good introduction to ROP.
What is Retinopathy of Prematurity?
This page concentrates on explaining the stages and the outcome for each stage.
PediatricWeb Article
This article explains the stages of ROP, risk factors, and treatment. Information about complications of treatment is included.
Information from USC
This page includes some questions to ask your baby's doctor.
Article from St. Luke's
This article includes some signs which may indicate that a child should be examined for late complications. Links to information about related conditions are also included.
ROP resources you can write for
This is a listing of brochures and booklets about ROP and where to get them.
Article by Dr. Barry Bloom
This article is very brief but is easy to read and discusses the development of ROP.
Dr. Stephen Charles' ROP FAQ
This page is written in a Q&A format and covers the details of ROP examination, treatment, and follow-up care.
Comments on Stages of ROP
Members of the ROP list comment on the stages of ROP and visual outcomes.
Recommendations for Screening: Canada
These are the recommendations provided in Canada. They address risk factors and provide guidelines for the timing and frequency of exams for infants at risk of developing ROP.
Commentary on Canadian Screening Guidelines
This article discusses the history of the development of screening guidelines in Canada, risk factors, and recommendations for follow-up care.
Thoughts on ROP Exams
Parents comment on problems with ROP examinations, including failure of doctors to provide appropriate screenings.
ROP information from Ross Chiappazzo and Associates
This page includes information about surgery outcomes and prevalence of long-term complications.
Commentary on Causes
This archive of postings from the ROP list showcases patients' feelings about causal factors and one doctor's responses.
Peter H. P. Aleff's article on lighting
This article asserts that the cause of ROP is exposure to harmful levels of light in the NICU.
Light reduction to prevent ROP
This paper was reviewed by Dr. D. L. Phelps and Dr. Watt and examines the effect of light reduction on the severity and incidence of ROP.
Effects of Light Reduction on Retinopathy of Prematurity
These are the official results of the Light-ROP study as published in the May 28, 1998, issue of the New England Journal of Medicine.
Do Blood Transfusions Lead to Eye Damage?
This article describes a study examining the effect of blood transfusions on the development and course of ROP.
Insulin Growth Factor and ROP
This article reports on a study which indicates that levels of IGF may be closely related to the development of ROP.
Retrolental Fibroplasia: A Modern Parable
This is the full text of a book written by Dr. William Silverman. The book examines the accuracy of early studies and the validity of the theory that overexposure to oxygen causes ROP.
Essential Information for Adults with ROP
Studies show that adults with ROP are at risk for a number of complications. Many of these adults are unaware that they had ROP in the first place and are now struggling to understand the cause of these complications.
Dealing with Complications
Members of the ROP list discuss coping with vision loss related to complications of ROP.
Phthisis
Dr. Scott Richards explains what phthisis is and what causes it.
Treatment Information from the Casey Eye Institute
This page provides information about current research being done as well as what happens when a baby receives cryotherapy or laser treatment.
Cryotherapy for Retinopathy of Prematurity (CRYO-ROP)--Outcome Study
This is a report on the results of the formal study of the use of cryotherapy for ROP.
Supplemental Therapeutic Oxygen for Prethreshold Retinopathy of Prematurity
This information from the National Eye Institute regards a clinical trial of the use of supplemental oxygen to stop the progress of moderately severe, prethreshold ROP. The article hypothesizes that premature infants may develop low blood oxygen levels due to respiratory problems and that the administration of supplemental oxygen may actually assist the retina in developing normally.
What Is a Scleral Buckle?
Dr. Scott Richards explains the use of the scleral buckle to treat ROP-related retinal detachment.
Vitrectomy for ROP
Dr. Scott Richards explains the use of vitrectomy to treat ROP-related retinal detachment.
Scleral Buckle or Vitrectomy?
Members of the ROP list discuss pros and cons of the two procedures and strategies for decision-making.
Patient Information from Schepens Eye Institute
This page includes figure showing ROP-related damage and explains the goal of treatment and the use of open-sky vitrectomy in the treatment of retinal detachment in severe ROP.
Scleral Shells
Members of the ROP list discuss the use of scleral shells for children with ROP who have small eyes.
Sarah's Story
Sarah Blake discusses the course of her ROP and her quest for treatment for late complications.
Dealing with Feelings
Adults with ROP and parents of children with ROP discuss ways to cope with attitudes about blindness.
Malaina's story
A Young adult who lost her sight to complications of ROP shares her story.
How Much Can You See?
Adults with ROP respond to this question, discussing the impact of ROP and the use of corrective lenses and low vision aids.