Cerebral/Cortical Visual Impairment (CVI) is a leading cause of visual impairment in children.
NIH CVI Registry and Research Resource:
The NIH CVI Registry is under development and will be a multi-institutional protocol coordinated by the National Eye Institute.
The NIH CVI Registry aims to gain insights into current diagnostic and rehabilitation practices, characterize various presentations of CVI, and facilitate further research into the condition.
After an initial data collection period, approved researchers will be able to gain access to registry data.
What is a registry?
“…an organized system for the collection, storage, retrieval, analysis, and dissemination of information on individual persons who have a particular disease or condition”
What might registry data be used for?
Registries can address a variety of questions. Data from this registry may be used to investigate the following research topics:
- Diagnose CVI more quickly and accurately
- Refine diagnostic batteries
- Identify outcomes that are most meaningful to CVIers and their families
- Document the scope and prevalence of co-occurring conditions
- Understand the neural basis of CVI
- Identify biomarkers for CVI
- Increase awareness of CVI
- Provide data to support policy changes
Related links: Learn About NEI | Learn About ODSHI