Developing an international European registry of children with Cerebral and Visual Impairment: Addressing an unmet need

What is CVI?

Cerebral visual impairment (CVI) is an umbrella term covering a range of visual impairments and/or dysfunctions in lower-order visual function (i.e., visual acuity, extent of visual fields, etc.) and higher-order visual perceptual abilities (i.e., face and object recognition, visual attention, visually-guided reach and movements, etc.). The visual impairments significantly affect the ability to perform vision-related activities throughout the day and can impact a child’s visual, motor, socio-emotional, and cognitive development, in addition to well-being and participation.

CVI arises from injury, dysfunction, or atypical development affecting the brain’s visual processing networks. The underlying cause may occur in utero, around the time of birth, during childhood, or later in life. Commonly reported risk factors include complications following preterm birth (i.e., periventricular leukomalacia – PVL), lack of oxygen (hypoxia), low neonatal blood sugar (hypoglycaemia), genetic conditions, and birth trauma. CVI can also commonly co-occur in individuals with cerebral palsy and other neurodevelopmental disorders.

CVI is likely a leading cause of paediatric-onset visual impairment; however, current prevalence and incidence estimates are largely derived from small, single-centre or single-country studies. Thus, we lack accurate data across diverse populations that can be used to inform European-wide policy surrounding the identification, diagnosis and care of children with, or at risk for, CVI.

What is a clinical registry and why do we need an international registry for CVI?

A clinical registry is a secure, consent-based information system that records basic demographics, type and severity of visual impairment, causes of CVI, co-occurring conditions, service contacts, and outcomes over time. An international registry of children with CVI will provide a clearer picture of how many children have CVI across participating European countries and what the primary risk factors are. This will improve care coordination, accelerate research, inform policy change for this growing population of children, and help governmental bodies allocate resources fairly and equitably so that each child with CVI can receive the care and services they need to reach their full potential.

A particular challenge in CVI is the variation that currently exists between countries and clinical services in how children are identified, assessed and diagnosed. An international registry using a shared protocol provides an opportunity not only to establish more reliable epidemiological data, but also to understand variation in clinical pathways and move towards greater consistency in identification, diagnosis, and support across Europe.

By implementing the registry simultaneously across multiple countries, we will ensure that the same protocol is utilised at each site, enabling consistency in data capture and database management.

Ultimately, the purpose of the registry is not simply to count children with CVI, but to use better evidence to improve identification, care pathways, educational support, and access to appropriate interventions and habilitation.

What do we hope to achieve?

Through the VIPPSTAR-NET International Clinical Cerebral Visual Impairment Registry (VCVIR), we seek to answer research questions including:

• What is the prevalence and distribution of CVI across participating European countries, and how does this compare with other forms of paediatric-onset visual impairment?
• What are the primary risk factors associated with CVI across Europe?
• Which conditions are likely to co-occur in children with CVI across Europe?

These questions address critical gaps in our knowledge surrounding CVI and will enable us to:

• Build clinical surveillance networks for children and young people (0–18 years) with CVI and, where included within participating country protocols, other forms of visual impairment across countries representing different socio-economic and geographical contexts. This will provide evidence-based indications of gaps and needs for personalised programmes, while carefully preserving ethical and privacy requirements in accordance with the General Data Protection Regulation (GDPR) and relevant national requirements.
• Implement standardised care pathways for the screening, identification, and diagnosis of children with CVI.
• Develop analytical methods to explore socio-economic, gender and health inequalities, producing preliminary findings to inform public health, education and professional services, and support more efficient and equitable provision.
• Provide an accurate record of the number of children with CVI within participating countries, which can then be aggregated to strengthen European-wide prevalence and risk data.
• Lay the foundations for extending the registry to additional European countries and developing a broader European surveillance network for childhood visual impairment.

Who is involved?

In the initial phase, the registry will be implemented across three participating countries in Europe, Moldova, Belgium, and Italy based on the VINCYP Model in Scotland

When will this launch?

We are currently finalising the data collection tools and obtaining approval from the relevant ethical and governance bodies. Enrolment is expected to begin in late autumn 2026. Stay tuned for updates!

How can you help?

If you or your child has CVI, or another form of paediatric-onset visual impairment included within the participating country’s registry protocol, and you live in one of the countries currently targeted for registry development (i.e., Moldova, Italy, or Belgium), you may be asked by your doctor to participate in the registry. By agreeing to participate in this exciting opportunity, you will help improve our understanding of CVI so that we can better serve this population and ensure equitable access to targeted interventions and habilitation approaches in the future.

If you are a medical professional and would like to partner with us, please contact the registry lead, Professor John Ravenscroft, for additional information at john.ravenscroft@ed.ac.uk