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Some unanswered questions about nystagmus for researchers to consider:

  1. What is the impact of the null zone/point on the field of vision? Do existing field tests measure this impact? If not, can you develop a test that does?
  2. Why does the null zone/point exist? Are there similar examples elsewhere in nature?
  3. How do normal age-related changes in vision (such as presbyopia and needing more light from the mid 40s onwards) affect the functional vision of people with early onset nystagmus?
  4. The standard eye test focuses on measuring visual acuity and doesn’t capture many of the impacts of nystagmus on vision. We have NAFX and NOFF, but they are not widely used. Are they effective ways of measuring the impact of nystagmus on functional vision or do we need new tools?
  5. What is the evidence that visual stimulation of infants with infantile nystagmus improves their vision?
  6. Patients diagnosed with acquired nystagmus often say they have been abandoned by health professionals. What should ophthalmologists, neurologists and other health professionals do to improve their experience during and after diagnosis?
  7. Given that nystagmus is a dynamic condition, how would you go about developing sim specs (simulation spectacles) to demonstrate its effect to people with normal vision?
  8. What is the impact of crowding and/or clutter on the functional vision of people with nystagmus?
  9. Why should stress, anxiety, fatigue, illness, etc, increase the amplitude and frequency of nystagmus eye movements?
  10. Anecdotal evidence suggests that 3D cinema works for some people with nystagmus, but not others. Does nystagmus affect 3D vision or are other factors at play here?
  11. Some ophthalmologists tell parents that infantile nystagmus can go away. What is the evidence for this? We know that nystagmus eye movements tend to reduce (or dampen) up until the age of five or six years, but in most cases reported to the Nystagmus Network nystagmus still impairs vision.
  12. Anecdotal evidence to the Nystagmus Network suggests that peer group support and accurate information about the daily impact of nystagmus make a huge and positive difference to most families. We would welcome a scientific evaluation into the impact of peer group support and accurate information.
  13. Why does nystagmus make it so difficult to make and maintain eye contact for many people with the condition? What are the social, emotional and economic consequences of this aspect of nystagmus?
  14. How do others perceive people with nystagmus?
  15. What are the benefits of faster, earlier and more accurate diagnosis and information about how vision is likely to develop?
  16. What are the social and other impacts of nystagmus in educational settings?

 

Research & Treatment

Image of a team of fundraisersEveryone wants to see better treatments developed for nystagmus. And eventually we'd like to find ways to cure or prevent the condition altogether.

So, one of NN's main goals is to support and encourage research into nystagmus - we wrote that into our constitution when we became a charity in 1989. We do this in different ways, for example by funding some research directly, by finding subjects to take part in research projects and by organising international research events.

You can read more about what we have already done and what we are doing now by following the links below. You can also Join NN and help us make a difference in the future.

  1. Can Nystagmus Be Cured? - A short summary of current thinking among researchers and medics with an interest in nystagmus.
  2. Complex Condition - A brief explanation of some of the challenges faced by scientists and doctors working on nystagmus.
  3. Research And Volunteers - It's not just about money. How the Nystagmus Network - and you - can make a difference.
  4. Image of researchers workingResearch Priorities - These priorities are based on a consultation exercise undertaken at NN’s 2011 Open Day and Annual General Meeting.
  5. Milestones - The links below detail some of the projects we've supported in recent years.
  6. Current UK projects: The links below give you a snapshot of nystagmus research in the UK. They include email addresses for some researchers. You're welcome to contact them if you want to take part in research.
  7. Published Research - Links to nystagmus research papers.
  8. Radio feature - Dr Jon Erichsen on nystagmus.