Thanks to our close partnership with the UK nystagmus research and clinical centres of excellence, you can help steer the future of nystagmus research.
“The Research Unit for Nystagmus at Cardiff University is looking for people with nystagmus to take part in a survey that aims to further our understanding on the number of people with nystagmus who have also been diagnosed with glaucoma.”
This survey is now closed. Thank you to everyone who contributed to the study. We will report on progress as soon as we can.
Jamie Enoch, Researcher at School of Health Sciences at City University London is conducting a study on support services available to UK-based relatives, friends or caregivers of someone living with a visual impairment.
Find out more and take part in the survey by clicking here.
Albinism researchers in Southampton (Jay Self and Helena Lee) would love to hear from anyone with any form of albinism who is over the age of 60. If you or anyone you know fits the bill, please complete the form.
Do you have recently diagnosed Acquired Nystagmus. Do you suffer from oscillopsia some or all of the time? Would you like to take part in a trial involving virtual reality glasses to see if they can alleviate the worst of your symptoms? If so, please contact us and we will put you in touch with the Sheffield team.
People with nystagmus are being invited to contribute to medical research by sharing their experiences of accessing a patient information pack, designed to support people living with the little known and complex eye condition.
The team at the University of Sheffield behind the Nystagmus Information Pack would like your help to review the pack and improve care and information services for nystagmus patients.
You can take part completing an online questionnaire from the safety of your own home.
UK Collaborative Research
A team of nystagmus researchers in the UK have recently shown that there is significant variation in the way people with nystagmus are supported and given information, from diagnosis to treatments and beyond.
They are now interested in studying public perceptions of nystagmus and are developing a similar questionnaire for both people with nystagmus (and their parents/carers) but also the general public.
The study will take the form of an online questionnaire and seek to understand both the public’s assumptions and understanding of what nystagmus is, alongside what people with nystagmus feel is commonly misunderstood or misinterpreted.
Thank you to everyone who submitted their thoughts on common misconceptions about nystagmus. This study is now closed. We will report on progress as soon as we can.