Highlights from the 2023 NIH CVI Workshop

Watch CVI community members, educators, researchers, medical providers, autism and cerebral palsy researchers, and more speak at the NIH CVI Workshop.

Nai speaks at the NIH CVI Workshop

Major news. The leading cause of childhood blindness and low vision is finally getting attention from a federal agency. 

The National Institutes of Health (NIH) hosted a CVI workshop on November 17, 2023, to foster awareness, increase the CVI research pool, establish consensus on CVI and the diagnostic process, and build a CVI registry. 

Finally, kids and adults with CVI will be counted. We’re getting the attention we deserve on a meaningful scale.

Together, we made this happen. In 2019, the National Eye Institute at NIH (NEI/NIH) opened an online Request for Information (RFI) and the CVI community—medical professionals, educators and therapists, and parents/caregivers—came together to show our strong collective voice. As a result, CVI was the single most mentioned issue. Since then, NEI/NIH set in motion planning for several CVI initiatives, and the NIH CVI workshop is a major step forward.

Learn more about how NEI/NIH set CVI as a research priority.

Sharon Lehman speaks at a microphone

A guide to the NIH CVI workshop

The NIH CVI Workshop was hosted by multiple NIH institutes: National Institute of Neurological Diseases and Stroke (NINDS), the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and the National Eye Institute (NEI). Speakers included CVI researchers and medical providers, NEI data scientists, researchers from the cerebral palsy and autism communities, an adult with CVI and a CVI parent, and CVI educators.

It was an incredible day that brought the CVI community together toward building much-needed consensus around CVI, the diagnostic process, exploring what the CVI registry might look like, and how to support caregivers and people with CVI so they can access the resources, supports, and services they need find success and access their world. 

You can watch a recording of the entire day’s presentations.

Below are the main agenda sections and time stamps from the video, and we highlight some of the speakers to help you navigate the video.

Our aims are clear: we want to be expanding awareness of CVI, building consensus in the field, and identifying technical and practical aspects of creating a CVI registry. That’s going to involve identifying issues with diagnostics. We want to hear opportunities for identifying the next scientific steps that will advance the field.

-Dr. Cheri Wiggs, Program Director, NEI/NIH

Opening remarks, background, and insights from NIH CVI pre-meeting

0:00 – 35:53

Get helpful background and context for how this meeting came to be and next steps for consensus on a medical definition of CVI.

The fact that we have representation from the eye, the brain, and development just tells you that [NIH] understands just how complicated CVI is. There is a saying that if you give people a voice, eventually they will be heard. And that’s how change happens. Today is proof that that’s a true statement. This has been a long journey. We have a lot more to do.

-Dr. Lotfi Merabet, co-chair of the NIH CVI Workshop

Insights from the CVI community

35:56 – 1:08:55

CVI community members shared their perspectives to inform the CVI medical community as they navigate NIH’s important CVI initiatives. A few highlights:

The CVI community—those of us experiencing it—can bring a lot of wisdom to the research on techniques that we can use not only to improve vision for those who want it, but to improve quality of life for those of us who don’t need vision in order to enjoy our lives.

-Nai, adult with CVI
Nai and Rachel smile and stand next to each other

Building a registry

1:09:15 – 2:24:22

A panel of presentations and group discussion about lessons learned from current registries and what the CVI registry could look like. A few highlights:

John Ravenscroft speaks at the NIH CVI Workshop.

Visual acuity and ocular comorbidities

2:24:59 – 3:12:22

Learn from leading CVI medical providers—Mark Borchert, Arvind Chandna, Veeral Shah—about CVI and poor visual acuity, CVI with good visual acuity and higher-order perceptual deficits, and CVI with ocular comorbidities.

Visual function and functional vision

3:12:33 – 4:36:43

As we continue this critical work, we have to include the diverse CVI manifestations, experiences, and patient profiles—so all people with CVI are believed. A CVI diagnosis is a big deal, and can have a direct impact on the ability for the patient to access services, tools, adapted materials, and specialized interventions and instruction—all to improve quality of life.

– Rachel Bennett, CVI parent and Director of CVI Now
Rachel Bennett speaks at a podium in front of a room full of people at the NIH CVI workshop. Projected behind her is a photo of her son, Henry, smiling.

Multidisciplinary considerations in diagnostic criteria

(4:36:47 – 5:43:17)

A wide array of presentations about the considerations of CVI with co-existing conditions, including Rachel Hawe sharing research on CVI in Cerebral Palsy (starting at 4:36:52), Catherine Lord on autism and CVI, leading CVI researcher Elisa Fazzi on a multidisciplinary approach to visual impairment in neurodevelopmental disorders, Karen Harpster on the impact of multiple disabilities on interventions in children with CVI (starting at 5:15:48), and Richard Bowan discussed the European consortium for CVI. 

The workshop concluded with focus group discussions about questions and areas the CVI registry could address. The goal was to learn from different perspectives to ensure this work is informed by the diverse stakeholders in our CVI community. 

Access the workshop overview and full agenda.  

NIH’s focus on CVI is a watershed moment for the CVI community. We have a federal agency prioritizing CVI. Kids and adults with CVI matter and they are worthy, and we are one big step closer to changing systems to help improve the quality of life for people with CVI. 

Stay connected with CVI Now for updates about NIH’s CVI initiatives, new CVI research, and all that we are learning from people with CVI and their families.

My ultimate dream is to see a neuro-processing-based definition included in the very definition of legal blindness. This will start with a lot of these assessments that are being created now and being refined, so that regardless of visual field and acuity, services, and medical support will also be available to all individuals with CVI.

Nai, adult with CVI
Yalissa walks down a sidewalk with a female Perkins staff member.

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