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Trans-NIH CVI Workshop

Roadmap to Consensus and Building Awareness

Illustration shows a roadway map superimposed on a brain


November 17th, 2023
9:30 am – 5:00 pm EST


  • In-person: NIH campus in Bethesda, MD
  • Virtual: live videocast (which will be recorded) 


Melinda Chang, MD – Attending Physician, Neuro-ophthalmology, Pediatric Ophthalmology, and Strabismus, Children’s Hospital of Los Angeles   

Lotfi Merabet, OD, PhD, MPH –Associate Professor of Ophthalmology, Massachusetts Eye and Ear, Harvard Medical School 

Workshop Hosts:

  • National Eye Institute (NEI)
  • Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
  • National Institute of Neurological Diseases and Stroke (NINDS)

Meeting Goals:

  1. Build Awareness—Grow the CVI research pool by engaging adjacent fields, sharing insights, and forging new collaborations 
  2. Promote Consensus—Establish what criteria, diagnostics, metrics, and testing parameters will be needed to reach consensus around CVI definitions, and to develop and validate evidence-based, age-appropriate test batteries and intervention protocols 
  3. Develop Registry—Determine registry requirements, data elements, inclusion criteria, standards, and research questions 


Cerebral/cortical visual impairment (CVI) is an umbrella term for subnormal visual function resulting from injury to vision processing centers, including higher order association areas in the brain. Etiologies include perinatal brain damage. CVI has distinct clinical features compared to brain-based visual impairment later in life, since damage to the visual pathways in CVI occurs during the window of visual development. Children with CVI may have subnormal vision despite an otherwise healthy eye exam, and therefore the condition has historically been under recognized. Individuals with CVI may exhibit a constellation of impairments, including cerebral palsy and cognitive delay, further complicating accurate diagnosis and treatment. Prevention and management strategies will require better understanding the causes of CVI.

CVI emerged as a priority area in the 2021 NEI Strategic Plan.  The plan outlined strategies to develop methodologies to diagnose and classify CVI to ultimately understand the neural basis and structure/function relationships. It also called on forging partnerships with CVI community stakeholders and improving clinician awareness to increase timely recognition of CVI when rehabilitation is most effective.

For more information about CVI:


View the recorded videocast


For questions related to this workshop, reasonable accommodation requests, or to provide feedback for CVI research efforts at NIH, please reach out to


Introductory Remarks and Background

9:30 am - 9:40 am 

  • Cheri Wiggs, PhD
    Program Director
    Low Vision & Blindness Rehabilitation
    National Eye Institute, NIH
  • Theresa Hayes Cruz, PhD
    National Center for Medical Rehabilitation Research
    Eunice Kennedy Shriver National Institute of Child Health and Human Development, NIH

9:40 am - 9:45 am
NEI Strategic Plan and CVI

  • Michael F. Chiang, MD
    National Eye Institute, NIH

9:45 am - 10:15 am
Background/Considerations of Diagnostic Criteria


  • Lotfi B. Merabet, OD, PhD, MPH
    Associate Professor of Ophthalmology
    Department of Ophthalmology
    Massachusetts Eye and Ear
    Harvard Medical School
  • Melinda Y. Chang, MD
    Assistant Professor
    Department of Ophthalmology
    Children's Hospital Los Angeles
    University of Southern California

Insights from the CVI Community

10:15 am - 10:25 am
Pittsburg Meeting Summary

  • Christine A. Roman Lantzy, PhD
    Program Director
    Pediatric VIEW Program
    The Children's Home & Lemieux Family Center

10:25 am - 10:35 am
CVI Perspective

  • Nai Damato 
    Access Technology Specialist/DeafBlind
    Private Tutor, Advocate, and CVIer
    SF LightHouse for the Blind

10:35 am - 10:45 am
Caregiver Perspective

  • Rachel G. Bennett, MEd
    Director, CVI Now and Parent Advocacy and Suppor
    The CVI Center
    Perkins School for the Blind

Building a Registry

10:45 am - 10:55 am 
Impact of Standardized Definition and Diagnostic Criteria on Future Clinical Trials

  • Stacy Pineles, MD, MS
    Professor of Ophthalmology
    University of California, Los Angeles

10:55 am - 11:05 am
The Scottish Visual Impairment Network for Children and Young People (VINCYP) Notification System of Childhood Visual Impairment

  • John Ravenscroft, PhD
    Chair of Childhood Visual Impairment
    The Scottish Sensory Centre
    Moray House School of Education and Sport
    University of Edinburgh

11:05 am - 11:25 am
Considerations for a Registry

  • Kerry Goetz, MS
    Associate Director
    Office of Data Science and Health Informatics
    National Eye Institute, NIH
  • Erika Nelson
    Program Manager
    Office of Data Science and Health Informatics
    National Eye Institute, NIH

11:25 am - 12:00 pm


Lunch Break: 12:00 pm - 12:40 pm


Section 1: Visual Acuity and Ocular Comorbidities

12:40 pm - 12:55 pm 
CVI With Poor Visual Acuity

  • Mark S. Borchert, MD
    Associate Professor
    Department of Ophthalmology
    University of Southern California

12:55 pm - 1:10 pm
CVI With Good Visual Acuity and Higher-Order Visual Perceptual Deficits

  • Arvind Chandna, MD, DO
    Senior Clinician Scientist
    Chandna SEELAB
    Smith Kettlewell Eye Research Institute

1:10 pm - 1:25 pm
CVI With Ocular Comorbidities

  • Veeral S. Shah, MD, PhD
    Assistant Professor of Ophthalmology
    Department of Ophthalmology 
    Division of Pediatric Ophthalmology 
    Pediatric Neuro-Ophthalmology
    Cincinnati Children's Hospital Medical Center

Section 2: Visual Function and Functional Vision

1:25 pm - 1:40 pm
Visual Perceptual Deficits and Neuroimaging

  • Corinna M. Bauer, PhD
    Assistant Professor
    Laboratory of Neuroimaging and Vision Science
    Gordon Center for Medical Imaging
    Department of Radiology
    Harvard Medical School
    Department of Ophthalmology
    Massachusetts General Hospital

1:40 pm - 1:55 pm
TBI and Eye Tracking

  • Glen Prusky, PhD
    Professor and Lab Director
    Physiology and Biophysics
    Burke Neurological Institute
    Weill Cornell Medicine

1:55 pm - 2:10 pm
CVI Range

  • Christine A. Roman Lantzy, PhD
    Program Director
    Pediatric VIEW Program
    The Children's Home & Lemieux Family Center

2:10 pm - 2:25 pm
Perkins Functional Vision Assessment

  • Ellen C. Mazel, MEd
    Director of Development and Research
    CVI Center
    Perkins School for the Blind

2:25 pm - 2:40 pm
Austin Playing Card Assessment

  • Nicola McDowell, PhD 
    Senior Lecturer, Institute of Education
    Massey University
    Founder and Creator
    Austin Assessment

Multidisciplinary Considerations in Diagnostic Criteria

2:40 pm - 2:48 pm
CVI in Cerebral Palsy

  • Rachel L. Hawe, PT, DPT, PhD
    Assistant Professor
    School of Kinesiology
    University of Minnesota

2:48 pm - 2:56 pm
Differentiation and Overlap of Autism and CVI

  • Catherine Lord, PhD
    George Tarjan Distinguished Professor of Psychiatry 
    Semel Institute of Neuroscience and Human Behavior
    David Geffen School of Medicine
    University of California, Los Angeles

2:56 pm - 3:04 pm
Multi-Disciplinary Approach to Visual Impairment in Neurodevelopmental Disorders

  • Elisa Fazzi, MD, PhD 
    Full Professor of Child Neuropsychiatry 
    Director of Child and Adolescent Neuropsychiatry Unit
    University of Brescia - Civil Hospital Brescia - Italy

3:04 pm - 3:12 pm
Impact of Multiple Disabilities on Interventions in Children With CVI

  • Karen Harpster, PhD, OTR/L
    Assistant Professor
    Occupational Therapy and Physical Therapy
    Cincinnati Children’s Hospital

3:12 pm - 3:20 pm
European Consortium for CVI

  • Richard J. Bowman, MD, FRCOphth
    Consultant and Associate Professor
    Department of Ophthalmology
    Great Ormond Street Hospital

3:20 pm - 3:35 pm


Break: 3:35 pm - 3:50 pm


Focus Group Discussions

3:50 pm - 4:20 pm
*Please note that this session between 3:50 pm – 4:20 pm will not be shown via livestream.

  • Accommodations and Education
    Facilitator: Christine Roman Lantzy, PhD
  • Special Populations: Teenagers/Adults with CVI
    Facilitator: Sharon S. Lehman, MD
  • Special Populations: CVI With Multiple Disabilities
    Facilitator: Barry S. Kran, OD
  • Global Perspective on CVI 
    Facilitator: Linda M. Lawrence, MD
  • Caregiver Perspective – Securing Services and Diagnoses
    Facilitator: Rachel G. Bennett, Med
  • Building Awareness and Advocacy
    Facilitator: Kristie F. Bjornson, PhD, PT

Meeting Summary

4:20 pm - 5:00 pm

  • Highlights of Focus Groups
  • Closing Remarks

Last updated: November 14, 2023