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Post date: Oct 07, 2014 6:1:1 PM
A link to the Autumn 2014 Lafora Progression Survey has recently been sent to all known owners of Mini Wires DNA tested as "Affected" and those clinically diagnosed as affected. The e-mail was sent to owners of dogs tested Affected through the WHDC testing scheme or those not tested, but previously reported as symptomatic. The data is being collected on behalf of Dr Clare Rusbridge and her team of Veterinary Neurologists who are monitoring the impact of Lafora over time. The survey is sent out on a twice yearly basis. Individual results are treated in complete confidentiality.You may already have seen in this month's Dachshund Breed Council newsletter that data gathered already was presented at a European Symposium on Veterinary Neurology in Madrid in September. That presentation focused on symptomatic dogs, but it is equally, if not more important that those with non-symptomatic tested Affected dogs also contribute on a regular basis in order to produce an unbiased picture of changes (or not) over time.If you have received an invitation to participate, we would be extremely grateful if you could complete the simple survey by 31st October at the latest (preferably sooner!). If you have not received an invitation and have a dog that is either tested Affected or showing any signs of Lafora, and would like to take part, please contact Gill Key ASAP: E-mail gill.key@gcsepod.com.
Thank you to everyone who is already responding to this survey. Your responses could help improve the prognosis and likely health outcomes of other Mini Wires diagnosed with Lafora Disease.
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