We wanted to share information on an upcoming workshop about Cerebral Vision Impairment (CVI). CVI impacts many people in the cerebral palsy (CP) community, and nearly 10 years ago, Michele, Shusterman, Co-Founder of the CP Research Network, blogged about it as she was fighting to sort out how to help her daughter Lilly (aka Maya) to see. The National Institutes of Health (NIH) wants to build upon the expertise and discussions that have taken place in recent years. Two of our directors have been invited to this new workshop and they will be moderating discussions.

The National Institutes of Health (NIH) is hosting a workshop on Cerebral Visual Impairment (CVI), Roadmap to Consensus and Building Awareness.

CVI emerged as a priority area in the 2021 National Eye Institute (NEI) Strategic Plan, following concerted stakeholder input from CVI patients, families, providers, teachers, and researchers. The plan outlined strategies to develop methodologies to diagnose and classify CVI in order to ultimately understand the neural basis and structural/functional relationships. It also called for forging partnerships with CVI community stakeholders and improving clinician awareness to increase timely recognition of CVI when rehabilitation is most effective. Toward these goals, NEI Director Dr. Michael F. Chiang announced in June 2022 that NEI would create a CVI patient registry. This workshop is designed to discuss technical and practical aspects of creating that registry and identifying the next scientific steps to advance the field.

In developing this workshop, NEI is excited to partner with the National Institute of Neurological Diseases and Stroke, and the Eunice Kennedy Shriver National Institute of Child Health and Human Development to incorporate expertise from the following disciplines: pediatrics, rehabilitation, behavioral science, and neuroimaging. Of particular interest to NIH leadership is learning from the CP Research Network about the development of their registry and how these lessons could be applied to a CVI registry.

Would you like to register for this workshop?

The workshop will be November 17, 9:30 am – 5 pm ET, in Bethesda, Maryland. In-person seating is very limited. Registration will open to the public on October 23, 2023. The meeting will be videocast in real time, and also recorded for later viewing. For more information, and to register for the live videocast or to attend in-person, please visit the event page https://www.nei.nih.gov/events/cvi-workshop.