Lafora Testing update and busting a few myths about the test and lab

Post date: May 24, 2014 4:34:25 PM

We have been asked several times why the testing takes so long and why we cannot use a different laboratory that might be able to do a quicker turnaround. We enquired at several laboratories in Britain and overseas and all declined to take up the testing for several reasons, the main one being that it is not a cost effective test and there is insufficient demand to make it commercially viable. The laboratory we currently use is in Canada at the Toronto Hospital for Sick Kids. The team there, led by Dr Minassian, have been researching Lafora Disease in children for many years and are seen as the world’s leading experts on this genetic anomaly. They had, in the past, developed a test for Lafora Disease in dogs and therefore it made perfect sense for them to reinstate this test.The test is extremely complex, hence it takes a long time to complete. It is also thoroughly checked to make sure results are analysed correctly. The identification of Carriers is extremely time consuming. The turnaround is roughly around 3 to 4 months, depending how busy the lab is with other things. We have to remember this is not a commercial testing laboratory, it does not have unlimited staff to divert to canine Lafora testing just when we decide to have a testing day.The laboratory in Canada is the official place for Lafora testing; it is the only one that the Kennel Club will accept results from for inclusion on their web

site and registration details. Therefore it is the one we will continue to use.

Our next testing day is 24th June and we will probably continue to hold two bulk testing sessions a year to help co-ordinate the transport to Canada and make some savings for people by doing it in bulk.

So, to bust a few myths currently doing the rounds:

There is not another laboratory offering a quicker turnaround – if somebody knows of a UK or any other, laboratory that is offering it, please let us know too.

The Canadian laboratory is not taking our money under false pretences – the costs are reflective of the work involved and it takes time to complete and carry out the quality control checks.

The Canadian laboratory will not share its testing methods – this is not true. Dr Minassian’s team shared their method and met with Centogene, which was the first laboratory that offered to work with us. The Carrier test was too complex for Centogene to fully develop and implement so, reluctantly, they gave up.

Any questions or queries, please ask us.

Sue Holt: susan.holt@talktalk.net

Nora Price: laforatesting@mypostoffice.co.uk