Roadmap to Consensus and Building Awareness
Date:
November 17th, 2023
9:30 am – 5:00 pm EST
Location:
- In-person: NIH campus in Bethesda, MD
- Virtual: live videocast (which will be recorded)
Co-chairs:
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:
- Build Awareness—Grow the CVI research pool by engaging adjacent fields, sharing insights, and forging new collaborations
- 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
- Develop Registry—Determine registry requirements, data elements, inclusion criteria, standards, and research questions
Background:
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: https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/cerebral-visual-impairment-cvi
Recording:
Contact
For questions related to this workshop, reasonable accommodation requests, or to provide feedback for CVI research efforts at NIH, please reach out to NEICVImailbox@nei.nih.gov.
Agenda:
Introductory Remarks and Background
9:30 am - 9:40 am
Welcome
- Cheri Wiggs, PhD
Program Director
Low Vision & Blindness Rehabilitation
National Eye Institute, NIH
- Theresa Hayes Cruz, PhD
Director
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
Director
National Eye Institute, NIH
9:45 am - 10:15 am
Background/Considerations of Diagnostic Criteria
Co-Chairs:
- 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
Discussion
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
Discussion
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