Collaborative, community-driven CVI research and care with Dr. Arvind Chandna

In this interview, Dr. Arvind Chandna, a pediatric ophthalmologist and researcher in the field of cerebral/cortical visual impairment (CVI), shares his personal journey into CVI research and clinical practice, his commitment to collaboration, and his vision for advancing the understanding and care of individuals with CVI. Opinions expressed are solely his own and do not express the views or opinions of his employer.

I’m advocating for a more collaborative, community-driven approach to CVI research and care. By actively involving CVI individuals and families we understand CVI as it affects the CVIer and is crucial in the development of tools, interventions, and support systems, we can ensure that they are truly responsive to the needs of the population.
-Dr. Arvind Chandna

Can you tell us about how you first became involved in the CVI field?

Dr. Chandna: There was a distinct moment in my UK children’s eye clinic over a decade ago. I was telling the mother of a patient I’ve had for several years that her child after eye surgery for strabismus (squint) has great vision and good depth perception.

The mother said, “What are you saying? She can’t see a thing.”

So I said, “She can read down the eye chart all the way to 20/20 visual acuity, just now.”

The mother responded with, “That may be so, she can’t see a thing.”

I asked what she meant by that and the mother gave me every feature of CVI, as if she knew it from a textbook. It was so similar to what I heard Professor Gordon Dutton, [a leading clinician researcher in the CVI field], say about CVI when I went to his talk a few years back. Well here was CVI, right in front of me.

The mother shared how they modified their home to change the boundaries, steps, walls, and nearly every part of their home. She told me about school and how her child couldn’t see her in the crowd at pick up, so she had to step out of the crowd for her daughter to find her. The mother shared a story of her daughter’s CVI meltdown in a theme park, and how she got lost and couldn’t find anyone.

I realized that I had been missing a crucial aspect of vision assessment in my clinical practice. I was focused on visual function (visual acuity, visual field) and not on functional vision—how an individual functions in their everyday life and uses vision in the outside environment—mediated by visual processing in the areas of the brain that went beyond visual function. So, I sought to better understand this condition, connecting with researchers and families to learn from their experiences.

Your research integrates both clinical practice and scientific study. How do you balance the two?

Dr. Chandna: Currently, I split my time between the U.K. and the U.S., overseeing research labs and setting up a new satellite research unit. My work focuses heavily on clinical research, where every patient interaction informs our studies. For me, the two are inseparable—research needs to be directly informed by real-world clinical observations, followed up by scientific research and then brought back to the clinics to help families and CVIers. While research provides critical insights, clinical practice offers the human connection and practical understanding necessary to make those insights meaningful.

In the U.S., at the research institute, it’s primarily basic science research projects, such as developing tools for assessment and intervention in CVI, eye movements, and EEG studies that lead to translational research. In the U.K, I am setting up a collaboration center with the institute in the US. in a large eye department in a children’s hospital. My work revolves around a clinical research unit embedded in the hospital, where I can see children in both research and clinical capacities. The balance is challenging but deeply rewarding because it ensures that every research question I ask is rooted in real-life challenges faced by children and families dealing with CVI.

My whole research life, even my clinical life, is about establishing networks and collaborating with other people including then patients and their families to achieve the best outcomes.

Dr. Chandna: My research in CVI has multiple prongs, primarily guided by conversations with families, children, and individuals with CVI.

One key focus is our semi-structured assessment tool, developed in collaboration with Professor Dutton, to evaluate functional vision rather than just visual function. This tool was designed and implemented by our research team. It is web-based and designed to be accessible and adaptable, allowing us to interview as many parents and CVIers as possible.

The tool now includes assessment for parents of children of any age, older children, plus adults and older CVIers. We conduct interviews via Zoom and we have an international reach—the tool can be translated into any language. We’ve also developed a self-administration screener for ages 4 to 18, which is 11 questions. Clinicians can send a self-administration link to parents through the web-based application that they can complete anywhere. The results are then sent back to clinicians, highlighting potential red flags and areas requiring further investigation.

The tool generates immediate, detailed reports that highlight visual challenges, their spectrum, and severity, while also offering practical strategies informed directly from the lived experiences of families and individuals with CVI. It is a distilled version of strategies, which have yet not been tested or validated, but are reported from people with CVI and their families about what is working for them. For example, ideas to modify the environment to make the CVIer more comfortable and safer. The report is produced by the tool for our own analysis, and we are ethically required to ask parents if they want a copy of the report, and they always say yes.

When used longitudinally, which is not something we have done yet, we hope to show the changes over time and answer questions like, ‘Does the visual function or functional vision in CVI get better or not?’ It also allows us to compare and contrast the challenges a toddler has compared to a 10-year-old, compared to a 16-year-old, and beyond.

Finally, the project also involves interviewing CVIers who have acquired brain injury, and based on early findings they are showing a similar pattern of challenges as the ones who had it at birth.

It is important to note that all CVI is acquired. CVI can be acquired at birth or soon after birth (early onset), or anytime afterwards (later onset) due to head trauma, concussion, tumor, stroke. Increasingly, genetic causes, especially those that have structural brain changes as part of the syndrome are being investigated for CVI. Though the genetic change is present at birth (i.e. congenital and not acquired) they may affect the visual system at birth or in time as the gene alteration takes effect. For example, we have a large cohort of children with a genetic syndrome called Malan syndrome, and our data analysis shows unique challenges that these children face.We are looking at all these different causes, different ages, different visual acuities comparing and contrasting the results.

Additionally, we’re exploring eye movements, focusing abilities, and brain responses through EEG to better understand the visual processing challenges in CVI. For example, we measure responses to motion, shapes, and facial recognition to understand how different areas of the brain process these visual tasks:

Can you see motion in different ways?
Can you see absolute motion?
Can you see relative motion?
Can you see complex motion?
Can you put shapes together?
Can you find a shape in a crowd?

All of these studies are long term. They take a lot of time because they are all prospective and include comparison with children and adults who do not have CVI.

You collect qualitative data from CVIers and their families and your SEELab also hosts a CVIer discussion group. What are some of the key insights or patterns from your discussions with individuals with CVI and their families?

Dr. Chandna: One of the most striking things I’ve learned is the sheer individuality of children and adults with CVI. Each person’s visual profile and experience is their own and offers a deeper, more complex understanding of CVI that defies simple classifications.

Take, for example, motion perception. The challenges CVIers have in looking at motion could be in many forms, in many situations, and all of them are different.

Can they process motion when they are stationary?
When they are moving and looking at something in motion?
Or when they are moving and looking at something stationary?
Do they have trouble when they are moving and everything else is moving?
Can they see anything moving at all?

Another example is visually directed reaching for objects. This act of wanting to pick up something requires about seven or eight different steps that come from different areas of the brain and the visual system with ultimate integration with the motor system. The questions we need to address are multiple:

Does this challenge come from an issue with visual attention and/or recognition?
Assessing distance and depth? Connecting motivation to using vision for this action? Understanding the relationship of the object with other objects around it?
Being able to match the shape of the hand to be able to effectively grip the object?
Using spatial perception to visually direct the arm and hand?

Each CVIer may have some or the majority of these challenges. Pigeonholing the challenges that CVIers experience into a short list of different domains is going to be difficult. Hearing directly from individuals with CVI and their families shows us this interaction and reveals the nuances and complexities that are often missed if the CVIer and families are not involved in the assessment in clinical settings.

Many CVIers have shared how their visual abilities can fluctuate significantly throughout the day or in different environments. What may seem like a straightforward visual concern in the clinic can manifest very differently in the real world. Factors like lighting, clutter, and task demands can dramatically impact functional vision. And every CVIer has their own wide range of strategies they use to support access in their everyday lives.

Listening to and working with CVIers, I’m always appreciative of their honesty, vulnerability, strength, and tenacity. I would love all clinicians to listen to the parents, the families, and the CVIers to understand what assessment tools we need to develop, what tools we need for intervention and support. All of this should come from the patient population, and be merged with what we learn from scientific and clinical research. There is no one-size-fits-all solution, and we must be willing to constantly learn and adapt based on what we are learning from people with CVI and their families.

Insights from Dr. Chandha on the use of Compensatory Skills

The biggest change that has occurred in my approach to interventions, accommodations, and treatment is this multisensory use of helping to improve everyday life, everyday functional vision.

Through our community discussion group and our research, we find that CVIers benefit a lot from nonvisual skills and nonvisual integration. How are the different senses–touch, taste, smell, hearing, proprioception, memory–supporting the ability to perceive that something is near you and far away from you, how are they working to help this CVIer navigate or deal with the world as it is?

Sometimes they use a particular sense to augment the vision they have.
Sometimes they actually substitute vision completely with this other sense.
They also may integrate senses together and switch, and they can switch between one strategy to the other so quickly that you think they’re using vision. One sense is teaching the other, and they can use both, and come to an answer quickly about what’s in front of them or navigating spaces.

We are coming to understand that individuals with CVI use other senses and compensatory skills to substitute, augment, and integrate with vision.

—Dr. Arvind Chanda, CVI Now Virtual Q&A, March 2025

How can clinicians approach the diagnosis of CVI to ensure accurate and timely identification and proper support for children and their families?

Dr. Chandna: It’s critically important that children and their families get a fair deal when it comes to being properly assessed. I believe arriving at a CVI diagnosis is clear now for most children and adults. Using structured medical and history-taking tools, clinical examinations, and functional vision assessments can raise significant red flags that point towards CVI.

We’re also learning more and more from current research. For example, there are specific optic nerve appearances in the eye linked to CVI that have been published several times, yet they are still often overlooked in clinical practice. The diagnostic pathway is available—we just need to ensure clinicians are equipped with the right tools and training.

There’s no excuse anymore not to initially suspect and then diagnose CVI. Only a few children may present with challenges that are not a clear CVI diagnosis. Obviously, in any condition—whether it’s glaucoma, strabismus, or CVI— in most cases where we can confidently diagnose and the few that fall into the borderline category may require more time or follow up. These cases might involve other brain-based conditions such as autism or ADHD where they may be an overlap. Sometimes one condition causes or influences the other, and other times it’s not so clear-cut. We need to keep an open mind about this. Uncertainty in diagnosis, assessment, and intervention has always existed in medicine.

Medical conditions don’t come in a box—they exist on a spectrum. For example, glaucoma can present at age 30 or 60, with varying features. You have to account for all of them. Eye-based conditions are usually a bit more defined. But brain-based conditions, like amblyopia—which isn’t an eye condition but a brain-based disorder—comes in many forms. Within any group of patients with amblyopia, there are subcategories. A pure sample of 30 identical cases is almost impossible to find. This complexity is true for all brain-based conditions and the brain is far more intricate and interconnected than most other organs and body parts. My main interest is finding ways to advocate for children with CVI and their families. This includes working with clinicians and, where appropriate, teachers of students with visual impairments. What I’m really focused on is ensuring children are assessed in a systematic way to determine their functional vision. Whatever is done has the backing of good research and is patient focused.

What do you see as the future of CVI research and care?

Dr. Chandna: The gap between research findings and real-world clinical application needs to be brought closer even with the present level of knowledge. When we compare where we are in research to where we are in the clinical world—which is what really matters to CVIers, parents, and families—the gap is still enormous. Unless we start addressing this gap from bedside to bench and back, CVI risks becoming an “ivory tower” research area with little real-world benefit for the people it affects.

We need to start with the basics: improving the understanding of CVI. We already know so much about it that there’s no excuse not to distill this knowledge into a teaching framework. Everyone involved in the care of individuals with CVI—including educators, TVIs, occupational therapists, speech therapists, physical therapists, and clinicians—need this education. It should also be incorporated into the training curriculum for anyone working with children or adults with low vision. This includes pediatricians, neurologists, neuroradiologists, and others involved in diagnosis, assessment, and intervention.

CVI is a complex and fascinating condition, but it’s not rocket science. Teaching about it must improve and learning about CVI should be mandatory for clinicians involved in CVI. They should be certified after completing such a course. We already require mandatory training in areas like equality, diversity, and conflict of interest, so why not include CVI education? It’s critical, especially since CVI is the most common cause of bilateral visual impairment in children in the developed countries, and its prevalence is increasing worldwide. We need to be prepared for this shift.

As a clinician, I am deeply interested in the future direction of management. As a researcher, I hope the research community recognizes the need for prospective, validated, and controlled studies—not anecdotal evidence or personal experiences—to guide CVI assessment and intervention. Some regulation is needed to ensure that assessment and intervention methods are credible and evidence-based.

There is already enough literature to suggest the right directions for us to take—and the ones to avoid. Beyond that, it’s essential to listen to CVIers, their families, and those involved in care. We need to distill their insights into actionable knowledge that feeds back into our understanding of CVI, the development of tools for intervention and assessment, and ways to provide meaningful support.

Finally, it’s important to remember that CVI is not just a childhood condition—it’s a lifelong condition. The challenges children face will evolve based on their age, environment, and life goals. Challenges present at age one year may reduce, but new ones will emerge as their environments become more complex and tasks more demanding. This is why a dynamic, informed approach to understanding and supporting CVI is so essential.

CVI is complex, but there is a path forward that includes a blend of rigorous research, compassionate clinical practice, and dedicated collaboration with families and individuals living with CVI.

Learn more about Dr. Chandna’s SEE Lab at Smith-Kettlewell Eye Research Institute and get involved in his CVI projects and studies.

Dr. Arvind Chandna work in CVI encompasses an understanding of the multidimensional nature of the manifestations of CVI through semistructured interviews and their neurophysiological correlates through steady state VEP techniques. With his team, he is developing assessment, accommodation, and intervention tools that will be translated into clinical practice. He also partners with parents of children with CVI and with older children and adults with CVI within a multidisciplinary discussion group to determine directions for research that will benefit the individual with CVI, the family, and the community.