We have a critical opportunity to influence the future of CVI research! 

NIH's National Eye Institute (NEI) issued a Request for Information regarding its Strategic Plan, entitled 2020 Vision for the Future, with a response date of January 8, 2020. Building upon its last Plan issued in 2012, NEI seeks broad input from researchers, clinicians, patients, vision advocates, and the public regarding research needs, opportunities, and areas for emphasis in the next five years––including needs and gaps in research, health, and quality of life. NEI has proposed seven cross-cutting areas of emphasis to foster input, including Genes, Neuroscience, Immune System and the Eye, Regenerative Medicine, Data Science, Individual Quality of Life, and Public Health and Disparities Research.

Click on the following link to access NEI’s request, which includes a response section at the bottom of the page: https://www.nei.nih.gov/form/rfi 

A few minutes is all you need to advocate for individuals with CVI and ensure CVI research becomes a priority. As the leading cause of visual impairment, more research is needed to ensure children with CVI receive an early diagnosis, appropriate medical care, and effective rehabilitative and educational services. We only have until January 8, so respond now.

It's important that medical professionals, educators and therapists, and families respond. Some ideas to consider:

  • Personalize. Share your personal and/or professional connection to CVI. (See more below)
  • Gaps in our knowledge. We need more research to support diagnostic assessments, prognosis, and rehabilitative services.
  • CVI is a growing public health crisis in the US. As the leading cause of visual impairment, there is so much we need understand about this complex condition. NEI should be leading the charge in making CVI research a priority. Individuals with CVI can't wait any longer. Children with CVI are going undiagnosed, misdiagnosed, and without appropriate follow-up care and educational plans. The need to respond to this public health crisis is paramount.
  • Vision and neuroscience. NEI proposes the emphasis on bringing together the various areas of vision neuroscience. We know that the visual system in the brain is complex and involves many areas of the brain. Future comprehensive research in CVI aligns well with NEI's interest in vision neuroscience. NEI also notes an interest in brain plasticity as it relates to an individual's quality of life. 
  • Connect to NEI's mission. On their home page it reads: "The nation's leader in vision research. NEI's mission is to conduct and support vision research and education programs that protect and prolong vision." As a leader in vision research, it's imperative that NEI fund research on the leading cause of pediatric visual impairment. NEI needs to take the lead on CVI research.

Respond to NEI's Request for Information now!

More ideas to consider when sharing your personal perspective:

  • Parents: sharing personal stories, and the stating potential impact of increased research on care, quality of life, and well being of children with CVI.
  • Clinicians/scientists: identifying gaps of knowledge such as establishing clear diagnostic assessments and understanding underlying causes, prognosis, risk factors, and development of intervention strategies. Also note that Europe is much further ahead in understanding the demographics of this condition than we are. A national data base is critical for this condition.
  • Teachers, early interventionists, and related staff: development of informed practices relating to intervention and (re)habilitation.  

Finally, please use the term cerebral/cortical visual impairment (CVI) in your response. There are indeed other possible terms to consider, but it is crucial that the NEI gets as many hits for “CVI” as possible so that they consider this as a single area of focus.

Respond to NEI's Request for Information now!

In gratitude and solidarity,

PCVIS

 

 

 

 

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