Lafora News Update 9th March 2012

Post date: Mar 13, 2012 7:28:1 PM

The following has been posted on the WHDC website...

As you’ll be aware the Canadian Lafora Research Team have requested a set of blood and saliva samples plus pedigrees from within the group of dogs that had previously been submitted for testing by Centogene. The reason for this is that they are hoping to perfect a saliva test by comparing results from a new testing procedure with their proven blood test, which they have recently reinstated. The WHDC Lafora Sub-Committee has been made aware of rumours/misinformation circulating and felt it was important to set the story straight.

How was the sample group selected?

Because the Lafora Sub-Committee is extremely aware of the huge frustration amongst owners awaiting test results due to the delays caused by the Centogene situation, it was agreed that this initial blood sample testing stage should be completed quickly in order that we could get back on track as soon as possible. We were already aware of a small group of breeders and owners who had offered, if/when the blood test was reinstated, to bring their dogs to one central location where a single vet could collect both blood and saliva samples. The cohort of dogs chosen includes dogs that are known to be Affected, those deduced to be Carriers by pedigree analysis and some we hope will be Clear (again from pedigree analysis). We appreciate the offers from several breeders to have their dogs included in this research trial and we now have a sample of dogs that meets the requirements on the Canadian lab.

When will the sample testing be complete?

The Canadian Laboratory has requested that saliva samples are taken using a specific brand of testing kit which they have used successfully previously. These have been ordered in sufficient bulk to test the first sample batch and any other dogs from the full test group that may need testing. These are currently being shipped, special delivery, direct from a Canadian medical supplies company. The intention is that the blood sampling of the 35 dogs will take place on 21st March and the Canadian Team have indicated that the results should be available approximately 3 weeks later.

What will the costs be for future testing and will there be an impact on the number of dogs that can be tested under the UK Lafora Testing Programme?

The intention has always been that funds contributed by the various breed clubs and the Kennel Club Charitable Trust would be used to subsidise the research and testing of as many dogs as possible within the 2 year period of the Lafora Testing Programme. The primary reason why the Centogene saliva carrier/clear testing was initially selected was a: it was offered at a cheaper price than the Canadian team were offering the same test; b: saliva sampling is cheaper and more convenient for owners to use than bloods c: the Canadian carrier/clear blood test was not then available and they had requested £24,000 in order to reinstate it , and d: as a research Lab, the Canadians originally said they couldn’t provide certification, but Centogene as a testing lab could. The Kennel Club indicated that they would require certificates to consider making the Lafora testing a requirement for their Assured Breeder Scheme.

Affected/Unaffected Test Prices

The Canadian team has not yet given us a price for the affected/unaffected test as they wish to see if they can perfect the Clear/Carrier test first. We are working on the assumption that a Canadian Affected/Unaffected saliva test will cost the same as in 2010 (i.e. £80, with owners paying £50).

Carrier/Clear Test Prices

If the Canadians perfect the carrier/clear saliva test, we hope that the price will be within a similar range to that quoted by Centogene (i.e. £120), although we are still awaiting confirmation.

If the Canadians succeed in identifying Carriers from saliva, those people awaiting results from Centogene will instead have their tests completed in Canada (at no extra cost). If we can only identify Carriers by blood tests, not everyone will need to have this done; it depends on the known status of parents/offspring - for some, an affected/unaffected saliva test will be adequate. In either case, the Canadians have now indicated that they can provide certification.

There have been some rumours circulating that the carrier/clear blood test may cost as much as £250. We would like to make it clear that we are still awaiting confirmation of a final price from Canada for this blood-based test. For the initial sample group of dogs, the Canadians are charging the Lafora Testing Programme £160 per dog, plus the cost of kits (£10), shipping and vets fees (one vet). We anticipate that when tests are done in greater bulk, the charge per dog is unlikely to be higher, hopefully significantly less. Again, it is anticipated that the Lafora research fund will be used to subsidise the fee charged to owners, although they will have to meet their own vet fees for taking the bloods.

The decision on the level of subsidy will be a balance between making the test as affordable as possible and maximizing the number of tests that can be subsidised over the 2 year funding period.

Will my dog be eligible for subsidised testing in Canada?

All dogs that have been submitted for testing so far will be eligible to take advantage of the subsidised testing programme in Canada, although as explained above not all dogs will need retesting. Saliva swabs are still being accepted. These will be tested, along with those remaining from the German programme, as soon as the initial research with the blood/saliva is completed by Canada.