Experts challenge old view of nystagmus
UK, September 11, 2009 -- It’s not often that researchers and doctors get together to talk about nystagmus. When they do, the focus is usually on how little help they can offer people and how tough a condition it is to treat. That view changed perceptibly at the Nystagmus Network’s second international Research Workshop in Abingdon, UK, in September 2009.
Tangible outcomes from the workshop, which was attended by 30 invited experts from eight countries, include:
realistic hopes for advances in putative surgery and drug treatments
the prospect of work to prevent nystagmus developing in infants
hopes of improved drug therapies for people with acquired nystagmus
new cross border collaborations between researchers and clinicians
a clearer understanding of the clinical benefits of eye movement recordings, modelling and measuring nystagmus
At the end of the workshop, which was organised and part funded by the UK Nystagmus Network (NN), one US ophthalmologist said: “We can already do things to help a lot of people with nystagmus. The biggest challenges I have are persuading my colleagues to change the way they view nystagmus and convincing them that often we can do something to help patients.”
Other comments from delegates about the workshop:
“The conference was very valuable because previously I did not have enough knowledge on eye movement recordings and their clinical value,” Slovenian vision scientist.
"It gave me encouragement and stimulation to do nystagmus research," ophthalmologist working in the UK.
"Extremely valuable! It is a fantastic opportunity to meet and exchange ideas with people in the field. A unique occasion that is very useful for clinicians and scientists," UK vision scientist.
"Some of the new modelling will have me look at my data in a new way. Discussions on trying to make our studies more relevant to patients' lived experiences were also helpful," Australian vision scientist.
"It seems INS (infantile nystagmus syndrome) is very special. As an infancy onset, lifelong disability, it comes with a raft of special social and economic issues that just aren't present for the 40 year old woman with MS (multiple sclerosis) who gets APN (acquired pendular nystagmus) or the 60 year old with DBN (downbeat nystagmus). INS seems to warrant its own dedicated group," US ophthalmologist.
NN thanked RNIB and Guide Dogs for their generous contributions towards funding this workshop. It also thanked its advisers – in particular Professor Irene Gottlob, Professor Chris Harris and Jay Self BM MRCOphth PhD -- for their help in organising the event.
NN will publish a more detailed article about the research workshop in its autumn 2009 “Focus” newsletter. In 2010, it will publish a book of the proceedings of the workshop.
© John Sanders, 2009
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