University of California, Los Angeles

Visual Outcomes after Hemispherectomy

Stacy L. Pineles, MD, from the Stein Eye Institute, Department of Ophthalmology at the University of California, Los Angeles (UCLA) is conducting a research study.

You were selected as a possible participant in this study because your child has undergone a hemispherectomy for management of seizures. Your participation in this research study is voluntary. 

Why is this study being done?
Hemispherectomy is an effective treatment for children with epilepsy but the visual outcomes of patients post surgery is unclear. Some children may develop coping strategies to improve vision, including changes in head position and eye alignment. This study aims to determine the prevalence of such coping strategies and better assess visual outcomes after surgery.


Complete an online survey answering questions i.e. are your child’s eyes misaligned?

How long will the research study take?
Participation will take a total of about 5 minutes.

Are there any potential risks or discomforts that I can expect from this study?

There are no risks with participating in the survey.

Are there any potential benefits if I participate?

Your child will not immediately benefit from his or her participation in the research. However, your participation will help doctors when counseling patients of children undergoing hemispherectomy set expectations regarding visual outcomes and improve the care of patients similar to your child in the future.

Will information about my participation be kept confidential?

Any information that is obtained in connection with this study and that can identify you or your child will remain confidential. It will be disclosed only with your permission or as required by law. All your data that is collected for this study will be stored under an alpha-numeric code assigned to you at the beginning of the study. Only study personnel will have access to the key linking your identity to the code. Data obtained from the study will be stored for future use by the PI and/or research team.

Are there any costs for taking part in this study?

There will be no additional cost to you or your health plan as a result of your participation in this study.

What are my and my child’s rights if I take part in this study?

·      You can choose whether or not you want to be in this study, and you may withdraw your permission and discontinue your participation at any time.

·      Whatever decision you make, there will be no penalty to you or your child, and no loss of benefits to which you or your child were otherwise entitled. 

·      You may refuse to answer any questions that you do not want to answer and still remain in the study.

Who can I contact if I have questions about this study?

·      The research team: 

If you have any questions, comments or concerns about the research, you can talk to the one of the researchers. Please contact:

Stacy L. Pineles, MD at 100 Stein Plaza, Los Angeles, CA 90095, (310) 267-1007

·      UCLA Office of the Human Research Protection Program (OHRPP):

If you have questions about your rights as a research subject, or you have concerns or suggestions and you want to talk to someone other than the researchers, you may contact the UCLA OHRPP by phone: (310) 206-2040; by email: or by mail: Box 951406, Los Angeles, CA 90095-1406

Question Title

* 1. Electronic signature of parent/guardian

Question Title

* 2. Date