The Pediatric Optic Neuritis Prospective Outcomes Study, a joint collaboration between NORDIC and the Pediatric Eye Disease Investigator Group (PEDIG), is now open to interested participants.  This observational data collection study is funded by the National Eye Institute and will determine our investigators' ability to enroll children with optic neuritis into a research protocol, and help us develop estimates of visual acuity outcomes in these children.  Treatment is at the discretion of the investigator. Click here to see the full protocol and list of secondary aims, as well as payment schedule.

The study is open to children and teenagers 3 to <16 years of age who present within two weeks of onset of unilateral or bilateral optic neuritis.

WHY ARE WE DOING THE STUDY?

The purpose of the study is to collect information about children who have optic neuritis so we can learn more about the characteristics of these children and study what happens to their eyesight.  By getting this information, we hope to improve the future care of children with optic neuritis. 

WHAT HAPPENS IF I AGREE TO LET MY CHILD TAKE PART IN THIS STUDY?

We will collect information about your child’s optic neuritis from their medical record.  We will perform a few tests, which are not part of regular care for optic neuritis.  These tests will include:

  • Quality of life questionnaires and puberty questionnaire
  • Visual acuity testing of both eyes

If your child is in the study, he/she will be seen 1 month, 6 months, 1 year, and 2 years after the first episode of optic neuritis.

WHY SHOULD I VOLUNTEER TO HAVE MY CHILD PARTICIPATE IN THE STUDY?

The best reason to volunteer for the study is to be part of a research study designed to provide answers about how to best treat optic neuritis.  Although the results may not be of direct benefit to your child, they are expected to benefit other children with optic neuritis. 

ARE THERE COSTS RELATED TO MY CHILD TAKING PART IN THE STUDY?

Testing that is specifically for this study will be paid for by the study.  The costs of treatment, office visits, and tests that are part of your child’s diagnosis and management of optic neuritis will be you or your child’s insurance company’s responsibility. 

IS THERE COMPENSATION FOR MY CHILD TAKING PART IN THIS STUDY?

If your child takes part in the study, you will be given $50 (by check or money card) for each study visit: enrollment, 1-month, 6-months, 1-year, and 2-years. The maximum amount you will receive is $250.  The check or money card is being given to you to cover the costs of travel and other visit related costs.  You will not receive any money for extra visits your child’s doctor believes are needed for your child’s usual care.

WHAT WILL BE OUR RESPONSIBILITIES IF WE AGREE TO TAKE PART IN THE STUDY?

If you agree to have your child be a part of the study, you will be expected to try your best to have your child attend all scheduled examinations.  A study takes a lot of effort from everyone involved.  You and your child will be a very important part of the research team and, like its other members; you have a commitment to the study.

WHAT DO I NEED TO DO TO HAVE MY CHILD PARTICIPATE IN THE STUDY?

You may contact the study’s central coordinating center.  If you are interested in participating, please email pedig@jaeb.org to find out if a participating site is near you.