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View Full Version : Swabs - DNA testing, Van Andel Research Institute



Nicki
7th May 2012, 12:24 PM
Calling ALL Cavaliers to unite ask your owners/people to give 100% participation & pass this info on to others. I encourage all breeders to not only cheek swab their dogs they own, but to contact all of their pet owners in asking them to do the same.
Doctors who see Cavaliers for these health issues to pass this info on to owners. I think we can form a village to help move this mountain by giving support in getting these ...cheek swabs done. Please read how you can help.
There is a group of researchers who are investigating the genetics behind Cavalier health issues. We are asking for your help and support at no cost to you. Post this to your FB, I have on Jill Scan. I condensed the info into a doc below.
The group is Van Andel Research Institute in Michigan and they are working on Cavalier genetics for SM, MVD, and early hearing loss. They were working on only hearing loss in the Cavalier, but have expanded their efforts to included SM, MVD & early hearing loss.
They are a non-profit and the tests (cheek swabs) they need to do the research are free.
This is a call out to ALL owners of a Cavalier to rise to the occasion to support this research. This is vesting just a wee bit of time to protect preserve the love this breed gives so freely to us. Please read below as to how you can help and FAQ.

1-1st is to E-mail to Linda see #11 below to get swabs for your dog(s) AND send this on to any others for them to participate.

2- You will also be automatically added to their database and get updates on how things are progressing.
If/when they locate the genes controlling these diseases you will automatically be sent the results for your dog(s).
(This can directly benefit one's breeding program and the future of Cavaliers)

3-Your dogs’ identities will be protected.

4-There are no age limits, as long as the dogs are weaned.

5-It does not matter where the dog is, in what country, it's breeding/pedigree, registration etc.

6-They need swabs from a total of 1000 Cavaliers, including ones that have been MRI’d clear, and those that have been MRI’d with SM, as well as bunches of “unknowns” or unscanned dogs.

7- If your dog is deaf or hard of hearing, make mention of this in your e-ml to let Linda know, she will send you a special kit for those dogs. It's a different collection for hearing.

8- You will fill out a short questionnaire that will be emailed to them in about the first of September. The questionnaire should take less than 10 minutes for each dog that a swab was sent in on.

9- All individual results are confidential!

10- A bonus is that everyone that sends in swabs now those dogs their genetic code will be in that database and as results become available for markers could qualify for additional free testing, and results prior to the final publishing of the marker.

11- E-ml Linda lynwoodstudio@yahoo.com and request the quantity of swabs needed for your Cavaliers. Be sure to include your name, email, mailing address along with the quantity of swabs needed.

12- Be sure to include on each dog’s cheek swab as to how this dog fits into the goals outlined below, include identification of that dog name & registration # DOB owner’s name written on the label for each cheek swab. More info is better than not enough. The reason is if the research team has any question they know which DNA they are needing more information on and also will help them to know at a glance what group this dog’s DNA fits into as to the parameters they are looking for to compare in trying to find the genetic mutation.

There are already participants from Canada, Australia, Alaska, and I believe England. The more the better to get as much diversity & get the #’s for the genetic profiling they need below. This group is well versed in canine genetics and has discovered the genetic links for diseases in other breeds of dogs.

Some further info on this research team from Linda:
All Clumber spaniels breeders bank DNA for research with them. A Clumber breeder/judge at the CKCS national took enough swabs back to Alaska for Cavalier owners because of Van Andels great help in Clumbers. I spoke with this Clumber person who impressed upon me their work. She did not expound on specifics but said that Van Andel's research saved her breeding program!! Talk about a passionate believer! This is even more motivation for us to make sure we get our Cavaliers into their research. The more I learn of this research group, the more I am so impressed!

Linda is a volunteer contact person for cavaliers and not affiliated with Van Andel nor has any interest other than is a CKCS breeder that knows this needs to be done
Again, I can not thank you enough. We have nothing to lose and everything to gain. The plus side is that we, as the participants could gain valuable genetic information free of charge and it is confidential!
Goal:
1,000 general population cavalier swabs across the US

100 early onset hearing loss

100 MVD clear

100 with MVD

100 MRI cleared of SM

100 symptomatic of SM

Fully Weaned puppies to geriatrics. As you see, all cavaliers qualify! There is simply no reason to not do this.

If your dog is deaf or hard of hearing, let Linda know and she will send you a special kit for those dogs. It's a different collection.

With all my heartfelt thanks, for doing a good thing for the dogs & their future,
Linda Baird Lynwood Cavaliers

Please email Linda at lynwoodstudio@yahoo.com and request the swabs for any Cavaliers you have see #11 above for the info needed to include.
It’s a chance to get some real data about these awful conditions. For anyone who has lost a loved dog to one of these conditions this is a way to remember them, to try to help the dogs now and in the future.




This is the original webpage for the hearing loss scheme which has now been extended http://www.vai.org/Research/Labs/NeurogeneticsCanineBehavior/Cavalier-King-Charles.aspx

MomObvious
7th May 2012, 12:42 PM
Will do especially since my puppy comes from unknown, the pregnant mother was dumped at a shelter. I'm all about helping research and this sounds so easy.

Melissa


Actually Nicki all I did was hit the orginial web site link on the bottom of your post they have all the info there and you can request the kit right there. Super easy!! Already done.

JessieAndMe
7th May 2012, 12:51 PM
Would be more than happy to participate in any way that I can. Will have to read the details tomorrow when on the PC and send off an email, so count me in.

Lani
7th May 2012, 01:56 PM
If they are a rescue and we don't know genetics, can they participate or no?

I'll email later for Lucky but wondered if Sparky can participate too since he's a mill rescue and I know nothing of his parents or lines.

Karlin
7th May 2012, 02:19 PM
I am going to email them for further detail on the SM side -- a dog 'clear' of SM might have MRId years ago as 'clear' and now have it -- they don't ask for recently scanned clear. Nor is there any information on how they will analyze/standardise the supposed 'clears' -- some neurologists and radiologists internationally have given dogs a 'clear' that have actually had syrinxes or pre-syrinxes (this issue of a standardised read was a HUGE issue for breeders in planning the BVA/SM scheme -- it should be a concern here as well. With the BVA/KC SM scheme, a panel of three neurologist experts in SM adjudicate on scans; none is accepted simply by the analysis it comes in with from a neurologist or radiologist and that scheme needs less precision than research for a DNA test would need). And what about CM, which is almost definitely closely associated? I wonder if they are aware of the work done so far, which does take into account both CM and SM?

I welcome this work especially on deafness (which WAY too many cavaliers have :( ) as well as MVD, which is easier to analyze than SM. :thmbsup: But unless the SM side takes into account all these details, I think it will be meaningless.

Pat
7th May 2012, 02:46 PM
[QUOTE

Goal:
1,000 general population cavalier swabs across the US

100 early onset hearing loss

100 MVD clear

100 with MVD

100 MRI cleared of SM

100 symptomatic of SM [/QUOTE]

And all of these categories are based on self-identification? Never heard of a valid study being conducted in this manner.

Pat

RodRussell
7th May 2012, 03:09 PM
... And all of these categories are based on self-identification? Never heard of a valid study being conducted in this manner.

Yes, odd.

Here are a couple of links directly to the researchers' websites. Another odd thing is that neither of them mention these studies, beyond hearing loss in the breed.

http://www.tgen.org/research/index.cfm?pageid=1484

http://www.vai.org/Research/Labs/NeurogeneticsCanineBehavior/Cavalier-King-Charles.aspx

Pat
7th May 2012, 03:33 PM
Don't have the time or inclination to research this in depth - but this sounds like that ACKCSC survey done some years back - only with cheek swabs! (That's the study that indicated SM was in 2% of the breed.)

I'm tempted to quote my favorite doctor, Gregory House..........but in this case I think it's not so much that everyone lies but more that I have no reason to accept self-identified health status "facts" from pet owners - we (and I include myself) just don't have the credentials to make these black and white pronouncements (my dog is MVD clear versus has a trivial leak but no audible murmur, for example) for a valid research project........which is why valid research projects use different criteria that is far more stringent.

Pat

MomObvious
7th May 2012, 04:08 PM
If you just check out this web site you can order the kit. Took me like 2 seconds. Nicki's right why not???

This is the original webpage for the hearing loss scheme which has now been extended http://www.vai.org/Research/Labs/Neu...g-Charles.aspx (http://www.vai.org/Research/Labs/NeurogeneticsCanineBehavior/Cavalier-King-Charles.aspx)


Melissa

RodRussell
7th May 2012, 04:25 PM
Don't have the time or inclination to research this in depth - but this sounds like that ACKCSC survey done some years back - only with cheek swabs! (That's the study that indicated SM was in 2% of the breed.) ...

The most valuable thing I learned from that survey -- http://ackcsc.org/images/stories/pd_files/ckcshealthsurveyfinalreport.pdf -- was information about the dangers of walking dogs on grass treated with pesticides and other chemicals. That was because the survey was conducted by Purdue's clinical epidemiology professor, Dr. Larry Glickman.

That was when I stopped running my dogs on the golf course behind my house.

karen baker
7th May 2012, 06:15 PM
yes consider it done, have emailed linda already, want to help as much as i can. karen

MadeleineSarah
7th May 2012, 07:16 PM
Already done and I will send it on to Oliver's breeder as I am sure she will help too.

M&O

Karlin
7th May 2012, 09:23 PM
There are some questions that have been raised about this approach however, as worthy as it may sound. These have been noted here in response to the same post in the Health section -- not deterring anyone from being involved, but really this does not sound a very professional approach and the last thing needed is a "DNA test" that is actually misleading and inaccurate.

http://www.cavaliertalk.com/forums/showthread.php?41506-Please-everyone-read-this

I'd want a lot more information on how they are conducting these projects and verifying information -- simply handing in owner documents especially if they are vets giving a 'no murmur' response -- as statistically a study has shown vets miss HALF of all early onset murmurs! -- and neurologists and radiologists have differed in interpretation on scans -- they need a lot of quality control, and independent verification/agreement on health results.

I wonder how much they actually know about cavalier health issues and that there has been DNA work down in the UK and Canada already on some of these conditions; ongoing work as well.

I also really question whether simply being free of SM is adequate -- the current, existing DNA work is looking at the complex relationship with CM. I dont think you can simply work on 'has SM/doesn't have SM -- especially if swabs come from dogs scanned more than 6 months previously as 'free of SM'. Many here know to their own shock that a dog can scan free of SM and be affected within 12 months.

Owner self-submission for scientific work, in short, is quite bizarre by research standards.

3kids1cav
7th May 2012, 09:38 PM
emailing now!

Kate H
7th May 2012, 11:53 PM
Karlin wrote: I also really question whether simply being free of SM is adequate

I would second this. Aled scanned clear of SM 3 years ago. If I had sent in that result 6 months ago, I would still have assumed him clear, whereas he almost certainly already had the SM that was diagnosed when he was scanned last week. And even a dog who scanned clear yesterday could be carrying the SM genes - this is a progressive disease and unfortunately no-one can say 'My dog has scanned clear and therefore will never get the disease.' And until the genes and mode of inheritance are identified, even those older dogs scanned clear with Rupert's Fund, while providing an invaluable control group, could still be carriers. This research project makes it all sound so simple - get enough genetic samples, and bingo! you'll identify the gene - and sadly it ain't.

Kate, Oliver and Aled

Pat
8th May 2012, 01:27 AM
If you just check out this web site you can order the kit. Took me like 2 seconds. Nicki's right why not???

Melissa

Actually, Nicki simply reposted from Jill S.'s Facebook page. The thoughts were not Nicki's, but were from someone who is not a member here. I don't know what Nicki's thoughts are! This has been all over the Cavalier message boards and email groups.

Just because something is simple to do does not make it worthwhile or valid. I like to give some thought into projects in which I plan to participate. I have participated in a couple of valuable research projects - including sending the heart/femoral arteries of a deceased Cavalier to Dr. James Buchanan, and participating in the Rupert's Fund scanning of older Cavaliers. In all instances, there were very specific instructions (which were not particularly simple to do) and board certified veterinary specialists were involved in interpreting data. I felt very satisfied that I was making a contribution to valid research, which was important to me.

I finally found the "rest of the story" as Paul Harvey used to say on another message board - the company is simply collecting 1,000 cheek swabs at this point and they have no idea what, if anything, they will do with them. They haven't determined if there will be ANY study beyond the early deafness research. Thanks very much to the person who clarified this - I agree that this has taken on "a life of its own." The truth makes pretty good sense, the rumors did not.

Happy swabbing,

Pat

Margaret C
8th May 2012, 01:32 AM
.........."This project has taken on a life of it's own. Long story short:

The research institute has an ongoing project looking at the genetics of deafness in Cavaliers. One of the researchers contacted me about setting up a table to collect swabs at our Cavaliers of the Midwest show last month. During one of our conversations, she got really excited about additional research possibilities with MVD and SM. We then met with the research director to discuss possibilities and he asked us to collect 1000 samples. He would be able to tell from those samples if there was a research project there that they would be interested in doing. We began collecting samples from dogs at the show. On their own, people who were not part of the core group posted information on email lists and encouraged people to request swab kits and participate in this effort. Now we have been inundated with requests for swab kits. However, the lab will not send kits overseas, so this is limited to US dogs. And we already have more than 1000 requests for kits.

We hope that this will lead to a study, however it is very early days"..........

Pat
8th May 2012, 01:38 AM
Ah - I just posted about this on the second thread here on the general health forum. But I didn't think it was okay to copy a direct quote from another message board, so I paraphrased the information.

Pat

MomObvious
8th May 2012, 01:56 AM
For me this becomes a why not. All they are asking for is a swab reasearch is reasearch to me who knows why they'll find.

Melissa

RodRussell
8th May 2012, 05:35 AM
... I finally found the "rest of the story" as Paul Harvey used to say on another message board - the company is simply collecting 1,000 cheek swabs at this point and they have no idea what, if anything, they will do with them. They haven't determined if there will be ANY study beyond the early deafness research. Thanks very much to the person who clarified this - I agree that this has taken on "a life of its own." The truth makes pretty good sense, the rumors did not. ...

Yeah, I read the same message. Considering what I know about the gene research for SM being conducted in Montreal and elsewhere by Drs. Quoc-Huy Trinh, Marie-Pierre Dubé, Guy A. Rouleau, and Zoha Kibar, the MVD and SM aspects of this new effort sound pretty naive to me.

It is amazing to me that 1,000 cavalier breeders will sign up for something like this in a few days, and yet so few breeders bother to follow the breeding protocols that have been around for several years -- MVD for 14 years and SM for 7 years. Surely no where near 1,000; not even 100; maybe a few more than 10.

Dublin
8th May 2012, 02:27 PM
My kits are on the way!

RodRussell
8th May 2012, 03:23 PM
I am very familiar with the collaboration between the Canine Genetics Group at the Van Andel Research Institute and the Translational Genomics Research Institute to find the genes that cause early-onset progressive deafness in CKCSs. CavalierHealth.org has been urging its viewers to contribute cavalier DNA samples to this same team since April 2011, to find the genes causing this genetic disorder in the breed (which, incidentally, Dr. Podell first identified). See http://cavalierhealth.org/deafness.htm#Current_Research

But in THAT study, the genetic deafness study, the team's call for DNA has been from both those cavaliers suspected of hearing loss AND older cavaliers with good hearing, for "control" purposes. And, it is a lot easier for a dog's owner to suspect hearing loss than for that owner to diagnose MVD and/or SM in our breed.

I see no such discipline in this new call for DNA from a thousand cavaliers which may or may not actually have SM or MVD, regardless of if or when they have been MRI scanned for SM or ultrasounded for MVD. So, it just seems naive on someone's part, considering how careful the other gene researchers have been in verifying diagnoses of SM and verifying controls.

Karlin
8th May 2012, 05:03 PM
The person who discussed this new scheme with Van Andel has noted elsewhere that this is NOT a study yet and these swabs are ONLY being used to help them decide whether to do a study at all; the study was simply ' a suggestion and is no more than that right now.

That doesn't mean not to submit swabs -- esp. for deafness, or in the case of 'unknowns' -- but I think the researchers are poorly informed if they are simply requesting owner-submitted information on scans/auscultations, and not aware/not been told of the ongoing DNA work that suggests the genetic link between CM and SM. Maybe they don;t understand that a 'clear' diagnosis is only -- as some breeders love to say -- 'a snapshot in time' and therefore surely not adequate alone for DNA work; scan results need lots more context than simply the SM/no SM result, need standardised reading for consistent diagnosis as some have missed syrinxes and dilations, and -- a cheek swab that might be coming years after the 'clear' scan is pretty darn meaningless for research!

I will try to get some clarification from them but others probably will attempt this too. I would feel it misleading to submit swabs for my dogs, whose last MRIs were 3.5 years ago and might now not be 'clear' at all for my clear dog.

Nicki
8th May 2012, 09:47 PM
Thank you for investigating this further - I'm sorry it has caused so many problems.

It seems a dreadful waste of time and money to collect all these swabs with no definite plans?]



I am going to combine the two threads running on this topic.

Brian M
8th May 2012, 10:12 PM
Hi
Nothing ventured ,the girls had a meeting and told me to send an email on their behalf ,which I have

Best Wishes

Bri

Pat
8th May 2012, 10:41 PM
I will try to get some clarification from them but others probably will attempt this too. I would feel it misleading to submit swabs for my dogs, whose last MRIs were 3.5 years ago and might now not be 'clear' at all for my clear dog.

If I am interpreting the "life of its own" statement correctly, I suspect that there is incorrect information in the original email/facebook post that has been widely circulated, particularly regarding the health status laundry list of the swabs being sought. The company in question appears to be reputable and expert on the topic, even if not expert on the Cavalier breed, and I trust that they will figure out the ramifications, limitations, etc. of such a project and will act (or not act) appropriately.

I actually wouldn't invest any more time or effort on seeking a clarification. This appears to be a giant misunderstanding.

As far as my personal feelings on sending in a swab "just for the heck of it" - That is something that I wouldn't do. And I suspect that the breeder of my Cavalier (the one of two for whom I have a pedigree; the other being a street foundling) wouldn't be crazy about my submitting his DNA and identification for some unknown future purpose despite assurances of confidentiality. But that's a decision that each owner will make for his/her own dogs. This is quite different from when I submitted his blood sample for DNA identification along with his scans as part of the Rupert's Fund study - this was for a specific, clearly understood purpose.

Pat

karen baker
8th May 2012, 11:21 PM
i really can,t believe what i,ve been reading on this website, so much negativity.Theres good people out there willing to give time and effort to try at no cost to the owners, to do what they can to try and stamp out these terrible conditions, our beloved pets are suffering, so what if its all a waste of time, they have my total support and backing. and i will be passing on the email to others. karen

RodRussell
9th May 2012, 12:44 AM
I've just been briefed by a member of the team -- Van Andel Research Institute & Translational Genomics Research Institute
-- about this project. They still are focused on the progressive hearing disability in the breed, and they have no plans to extend it to MVD and/or SM. But, to quote them: "If during this collection effort we achieve sufficient interest and samples (the latter being critical) we will consider expanding our research to include other disorders for study."

This team has a worthy goal -- to dig as deep as possible into the genes causing progressive hearing loss in the CKCS -- and I urge everybody to consider submitting DNA to the team for that purpose, if you either have a cavalier than has become deaf in early adulthood or have much older cavaliers which have not lost their hearing.

Love my Cavaliers
9th May 2012, 12:58 AM
Is 11 years old and not deaf a much older cavalier or is that not old enough?

RodRussell
9th May 2012, 02:11 AM
Is 11 years old and not deaf a much older cavalier or is that not old enough?

That is plenty old. Send in that DNA!

Karlin
9th May 2012, 02:08 PM
Agree fully, Pat.

This was widely circulated as information on a specific study that was happening. It is actually a mix -- the swabs are ALL useful for the hearing project and I encourage people to send swabs for this reason. :thmbsup: Rod has had information up about that project for around a year and I agree with his statement:


This team has a worthy goal -- to dig as deep as possible into the genes causing progressive hearing loss in the CKCS -- and I urge everybody to consider submitting DNA to the team for that purpose, if you either have a cavalier than has become deaf in early adulthood or have much older cavaliers which have not lost their hearing.


However, it is a huge leap to have had people notify thousands of people that a new DNA study on cavaliers was now happening and to encourage them to send swabs for *a study* -- many here assumed this was an actual research project underway. It isn't. I am not sure who began circulating this misinformation but it is that misinformation on a now very large scale which will no doubt be a disappointment to many who believed they were directly supporting a current research project. :(

The concern over the broader project is not negativity -- but needed close examination of what is being asked for this specific project; an attempt to understand what is actually being done; and an expression of some concern that any kind of study including a preliminary screening could be based on casually solicited owner information, especially for SM which as we all know, is extremely complex. As breeders themselves are (or seemed to be) keenly aware of this and often are the ones most stringently critical of any research project, I would have expected some to be better aware of the problems of simply submitting old scan information with swabs! Current DNA research on MVD and SM has been extremely meticulous on those lines, as Rod notes. Since when have breeders believed their old scans matched to swabs years later would be accurate for DNA work? These are the same people who have been so demanding -- rightly so -- of a neurologist adjudication panel for the BVA/KC scheme for SM to standardise all MRI readings.

Pat also is right to flag potential privacy issues. While this is a recognised and well known research foundation, do keep potential privacy and usage concerns in mind as you would for any use of samples and health results for something not yet happening and without clarification of what might be used and how. I am really surprised breeders supporting this 'assessment' are not more concerned about this information when there's been so much discussion of publishing scan results for the BVA/KC MateSelect scheme!

Simply accepting an email circulating on the internet without questioning the processes in place and the intent -- especially when there has been zero information on the website to indicate there's any such series of studies happening -- is not generally wise and I am sure people would not send off information on their own health or children's health without wanting to verify what is actually happening and the structures in place for assessment.

I would not submit swabs for SM for this project because I firmly believe they could be misleading for CLEAR dogs in particular, and could therefore contribute to wasted research effort and worse, wrong assumptions for any resulting DNA test. I am not going to contribute to anything which could potentially worsen things by giving assurance about SM that is incorrectly determined.


If I am interpreting the "life of its own" statement correctly, I suspect that there is incorrect information in the original email/facebook post that has been widely circulated, particularly regarding the health status laundry list of the swabs being sought. The company in question appears to be reputable and expert on the topic, even if not expert on the Cavalier breed, and I trust that they will figure out the ramifications, limitations, etc. of such a project and will act (or not act) appropriately.

I actually wouldn't invest any more time or effort on seeking a clarification. This appears to be a giant misunderstanding.

As far as my personal feelings on sending in a swab "just for the heck of it" - That is something that I wouldn't do. And I suspect that the breeder of my Cavalier (the one of two for whom I have a pedigree; the other being a street foundling) wouldn't be crazy about my submitting his DNA and identification for some unknown future purpose despite assurances of confidentiality. But that's a decision that each owner will make for his/her own dogs. This is quite different from when I submitted his blood sample for DNA identification along with his scans as part of the Rupert's Fund study - this was for a specific, clearly understood purpose.

Pat

Karlin
9th May 2012, 02:28 PM
Also they have stated this is ONLY for US based dogs -- not sure about Canada but they will not send swab kits abroad.

Lani
9th May 2012, 03:21 PM
I emailed to request a kit when I first saw this and never heard back.

anniemac
9th May 2012, 03:23 PM
If someone could put this much effort and would change the ackcsc.org website for SM, then I would be happy. I have been bothered about it for so long and have held my tongue. If you want to know about or Syringomyelia and go to our parent club it goes to Dr. Hendrix response to PDE. Go to the http://www.chihuahuaclubofamerica.com/ and in bright red they have an alert for Syringomyelia and we have Dr. Hendrix response. I hate writing negative about our breed clubs but if they want to contribute money to funding these projects PLEASE just update the website so that pet owners may know what's going on with their cavalier.

That would make my birthday

sunshinekisses
9th May 2012, 04:09 PM
That is very sad about the USA AKC parent club. I think there are still too many breeders with their head in the sand! I asked for a DNA kit, I have a dog here with MVD and I want to help. I would like to see some advances made with MVD as far as genetic test to help breeders eliminate the early onset.

Karlin
9th May 2012, 04:12 PM
I think the person handling the kits for has been swamped so suspect they will eventually show up for people in the US.

If anyone just wants to return swabs for the deafness project -- I'd go to the website and use the direct link there to get a kit for the deafness swabs.

Margaret C
9th May 2012, 04:19 PM
; and an expression of some concern that any kind of study including a preliminary screening could be based on casually solicited owner information, especially for SM which as we all know, is extremely complex.



These concerns about casually solicited owner information also apply to the 'European EBV Project'.

This a a scheme that some UK show breeders are promoting, despite the fact we now have in in place an official standardised BVA/KC MRI scheme with a panel of neurologists and an appeal system.

I can appreciate the fact that European breeders who cannot use the UK BVA/KC CMSM Scheme and submit the information to the UK EBV scheme may see this as the best that they can do, and I applaud them for their initiative, but why would any UK breeder who is seriously concerned for their own cavaliers and are sincere in the wish to give the breed a healthier future, feel justified in using it instead of our own UK scheme?

No harm in supporting this initiative as well, as it will not cost them anything, but instead of our own UK scheme?

Over the years the scanning process has been refined so that the MRIs that are now providing the information to the UK EBVs are comparing like to like. They are done in the same way, for the same time, to the same strength, with the dog placed in the same position.

The European EBVs ask for "only official reports from competent veterinarian specialists"????

If the AHT felt they could only use the standardised information that will be coming from the BVA/KC scheme then how can anything based on a mishmash of health test results from all different countries give anything like such creditable results?

I ssuppose there are three reasons that would make the European EBVs attractive to certain UK breeders.

1) It would save them £100 on the cost of scanning (I wonder just how much they sell puppies for? )

2) Their results would stay unpublished. No one will know if they are risking the health of their puppies by using cavalier parents that are too young or badly affected with SM.

3) They can continue to claim they have scanned their cavaliers when in fact they have not done so.

Chestergate does a lot of low cost scanning but the results are not automatically submitted to the official scheme.
That does not stop the owners from doing so, they can pay £100 and submit their results to the official scheme. There will obviously be bias in what breeders decide to submit........but if the news is good why would a breeder hesitate in submitting it? They would want to see their cavaliers' 'clear' results shown on the KC website.

As soon as the first results go onto the KC website my advice to puppy buyers will be:
Responsible breeders who are honest and want to help the breed survive will submit their scans to the Official Scheme and you should be able to see those results published on the Mate Select programme.

Karlin
9th May 2012, 04:20 PM
If someone could put this much effort and would change the ackcsc.org website for SM, then I would be happy. I have been bothered about it for so long and have held my tongue. If you want to know about or Syringomyelia and go to our parent club it goes to Dr. Hendrix response to PDE. Go to the http://www.chihuahuaclubofamerica.com/ and in bright red they have an alert for Syringomyelia and we have Dr. Hendrix response. I hate writing negative about our breed clubs but if they want to contribute money to funding these projects PLEASE just update the website so that pet owners may know what's going on with their cavalier.

That would make my birthday

Wow -- chih club even listing the affected dog and breeder. I know there have been others, too -- some were on some of the early discussion lists for SM in dogs. They really need to update the page but it is a very honest and open start.

On one of your earlier questions that I think is on a different thread -- yes, asymmetrical syrinxes are associated with more pain than symmetrical ones. I think that is why my Leo, who has a wide but symmetrical syrinx, has done fairly well for so long on medications.

Pat
9th May 2012, 04:49 PM
If anyone just wants to return swabs for the deafness project -- I'd go to the website and use the direct link there to get a kit for the deafness swabs.

The sad thing is that I have a 9 yr, 7 mo old Cavalier who is not deaf. Under normal circumstances, I'd participate in this project. (He has also had an MRI with an interpretation by Dr. Rusbridge.) But I won't submit his DNA for this project because of the nebulous nature of this "maybe" future study in which "maybe" owner questionnaires (alone?) will establish health status. I won't risk contributing to research that doesn't use impeccable methodology.

And Anne - I completely agree with your post!

Pat

Karlin
9th May 2012, 06:41 PM
Pat, I would think you could go through the direct channel with them to submit for deafness only and not supply other information -- unless now all dogs are being pooled into this prospective project.

I see now they are requesting swabs from all the owners of dogs fully clear of everything including any Chiari-like malformation... as the project need "a number" of such dogs out of the 1000 as controls.

Well, this was the key problem for the existing DNA project and even for the BVA/KC scheme. I am told there are NO fully CM clear dogs in the entire cavalier database for the BVA/KC. Clare Rusbridge has seen just a few in over a decade of research. I think ANY fully clear dogs MUST have scans confirmed by some sort of neurologist panel as I absolutely do not believe that a reading by a single radiologist/neurologist giving a clear for CM can be accepted. Too many are not that good at reading for CM and every case I know of a clear dog that has gone for review has been found to have CM to some degree.

Assuming a dog is clear for this research from a single person's reading is just insane. This is NOT the way to do DNA work.

anniemac
9th May 2012, 09:59 PM
I see now they are requesting swabs from all the owners of dogs fully clear of everything including any Chiari-like malformation... as the project need "a number" of such dogs out of the 1000 as controls.

Well, this was the key problem for the existing DNA project and even for the BVA/KC scheme. I am told there are NO fully CM clear dogs in the entire cavalier database for the BVA/KC. Clare Rusbridge has seen just a few in over a decade of research. I think ANY fully clear dogs MUST have scans confirmed by some sort of neurologist panel as I absolutely do not believe that a reading by a single radiologist/neurologist giving a clear for CM can be accepted. Too many are not that good at reading for CM and every case I know of a clear dog that has gone for review has been found to have CM to some degree.

Assuming a dog is clear for this research from a single person's reading is just insane. This is NOT the way to do DNA work.

I have to agree with Karlin on this. When Elton had his MRI I KNOW his neurologist at first said he had NO CM and of course NO SM. I thought it was so rare that I was shocked. I know if it was another person they would stop at that. I thought to myself that he could be valuable to research. I then told him let me ask some people because maybe they would want his DNA or images. Nothing against his neurologist (I loved him with Ella) but he came back and said he spoke to a radiologist and looked more and he DOES have mild CM. So I can see how this can really be hard and one neurologist may think one thing, which is nothing against their abilities, but I would want more than one opinion since it is something that is not common in our breed.

Karlin
9th May 2012, 11:55 PM
Yes it is important to understand that missing CM is not necessarily a criticism of a neurologist or radiologist. Moderate to milder CM can be difficult to see if someone isn't specifically very experienced in doing so and many are not. A neurologist may be very experienced and fine with locating a syrinx but completely miss CM. It is far more subtle than human Chiari malformation from what I understand from neurologists who have spoken about it; also, much depends on which view (eg which slice of the MRI) one is looking at. CM can be more easily seen in some positions and angles than others.

I think anyone who has had a scan done that purports to be of a fully clear dog should have it read for a second opinion by Clare Rusbridge, personally, or one of the other neurologists on the BVA/KC panel (or simply submitted for the BVA/KC scheme). To NOT do so and clarify the reading if needed, means a willingness to potentially mislead -- breeders or puppy buyers. If the scan is truly a fully clear dog then the scan and DNA will almost certainly be important for research. But using such dogs as purported clears for the proposed research project and submitting their DNA on swabs WITHOUT having verified that they truly are clear -- and the chances are high that they are not, given UK statistics -- could completely destroy the project of finding out DNA answers about SM.

Any breeder who truly cares about research and results must be aware of how important this is.

Kate H
10th May 2012, 12:36 PM
A few posts back, Margaret wrote: Chestergate does a lot of low cost scanning but the results are not automatically submitted to the official scheme.

In fairness to Chestergates, my understanding is that no results are automatically submitted to the BVA/KC scheme - you have to choose to pay an extra £100 for the privilege! While we were waiting at Chestergates when Aled was scanned, the breeders also waiting were complaining bitterly about the price of scanning, and that the extra £100 was very off-putting. Chestergates are using the same grading scheme as everyone else, so you can always ask for the results to be submitted (and pay the extra £100), or presumably send your CD and certificate with payment directly to the BVA yourself. Chestergates isn't perhaps fully supporting the KC/BVA scheme, but for breeders who won't support the scheme on grounds of cost anyway, they can at least go there to get their breeding dogs checked and, if diagnosed with SM, possibly started on treatment. If all scanning centres charge more than £300 a go for a mini-scan that is submitted to the KC/BVA scheme, might not some dogs go unscanned and be used for breeding anyway, or have their SM left undiagnosed and untreated? Yes, the Chestergates low cost scanning may not be the ideal in the long term, but it is at least helping as many Cavaliers as possible to be scanned for their own health and wellbeing and that of their possible litters. Perhaps the KC/BVA charge is something the Cavalier Club (or the KC Charitable Trust) could consider subsidising for the good of the breed?

Kate, Oliver and Aled (who is a foundling of unknown parentage, so his scan can't help research!)

sins
10th May 2012, 02:10 PM
The price of scanning certainly has gone up sharply.
Stonelion and Chestergates are still quite reasonable with the base scan costing approx £200.
Most other centres now seem to start at £300 plus £100 for BVA panel.
Personally as long as breeders screen for SM and make appropriate breeding decisions,I find it hard to be critical.
Chestergates aren't using the same reporting and grading format as the BVA.
The BVA cert is very basic, you have CM Grade 0,1,2.
SM grade 0,1,2 and a letter system taking the age of cavalier into account.
There is a box to include the transverse width of a syrinx.
No info on CCD width to be reported,no dilated ventricles,no PSOM info.
However I can see how this logically feeds into the EBV scheme very neatly.
Breeders who have been used to Clare Rusbridge's detailed reports, find the new BVA cert lacking in information.
The Chestergates certs are different.
You still have CM 0,1,2
SM has 4 grades 0,1,2,3. with a box for syrinx location.Age is not taken into consideration.
It also reports dilated ventricles and PSOM findings.
Overseas breeders can and do use use the BVA/KC scheme.One champion cavalier from overseas has been graded under the new scheme (good result too).
Irish people have used it,the only difference being that unless you have a KC registered dog,your results will not be published on the KC healthfinder.
It's fair enough not to force people to use the BVA scheme,but I would like to see scanning centres submitting results automatically to the AHT EBV scheme and the European EBV scheme.
The BVA scheme has had initial teething problems with the form, and it's being ironed out now,but the biggest issue with the BVA scheme is the accompanying guidelines.To be blunt about it,as they stand,they're pretty much aspirational, as the over 5 stud dogs simply don't exist. There really needs to be a selection of over 5 stud dogs,fertile,good hearts,free of EF/DE/CC,not too closely related to the current genepool, and scanned without central canal dilation to make it work.
A previously "A" grade bitch with a small central canal dilation at 2.5 years could previously be mated to a D dog under the old guidelines.
Under the new guidelines,she now has now become the "D" partner and must be mated to an over 5 "A" stud dog.
It would have been enough in the interim to use an over 3 stud dog without central canal dilation in this case,as people who have been doing this seem to get back good results from scanned offspring,until those over 3 dogs without CCD become the over 5s and certainly, many of them will in the coming 18 months.
I think most people would like to have seen more measurable progress by now,but it looks like patience is required.
*Forgot to add,scans from Stone lion and Bristol are automatically sent to the BVA panel for reading,there are no other options than to pay the £100.As I understand it,none of the scrutineers on the BVA panel will offer a report outside of the BVA scheme as it would create a conflict of interest.
Sins

Kate H
10th May 2012, 03:57 PM
Just to clarify what Sins said about Chestergates grading: SM has 4 grades 0,1,2,3. with a box for syrinx location.Age is not taken into consideration.

In practice there are really only 3 grades for SM on Chestergates certificates (as received by Aled last week!). Grade 3 (Chestergates' fourth grade out of 0, 1, 2, 3) specifies 'syringomyelia or pre-syrinx with or without central canal dilation'. Grades 1 and 2, describing central canal dilation of 2mm or more, are the equivalent of the BVA Grade 1: CG Grade 1 is for dogs of 6 years or more, and CG Grade 2 for dogs of less than 6 years, but both grades are for the same level of central canal dilation. BVA Grade 1 conflates Chestergates Grades 1 and 2, adding a different letter after the numeral to indicate the different age ranges. So both Chestergates and BVA are using the same three criteria (normal, central canal dilation, syrinx), but with different ways of indicating age difference. The BVA neurologist panel will be aware of this difference in recording results, and would presumably have no problem adjusting the Chestergates data to fit the BVA scheme.

Kate, Oliver and Aled

sins
10th May 2012, 04:12 PM
Grades 1 and 2, describing central canal dilation of 2mm or more, are the equivalent of the BVA Grade 1
The BVA Grade 1 describes central canal dilation of less than 2mm,and they do detect very miniscule ccds well below 1mm in that range.
The BVA Grade 2 refers to any central canal dilation above 2mm,any pre syrinx or syrinx.
Sins

tuppenlil
10th May 2012, 07:27 PM
The BVA neurologist panel will be aware of this difference in recording results, and would presumably have no problem adjusting the Chestergates data to fit the BVA scheme.

Kate, Oliver and Aled

Kate
The BVA panel give interpretation of the MRI scan directly from a DICOM disk, they do not take a grading as interpreted by any other individual. This interpretation has to be agreed by two from the panel.

Maggie

Kate H
10th May 2012, 10:00 PM
Thanks for correcting me, Maggie. I picked up the KC/BVA leaflet at Crufts but haven't looked at it since and had forgotten how the system worked.

Kate, Oliver and Aled

Karlin
10th May 2012, 10:15 PM
It's a shame there are not more over 5 SM-clear studs -- or over 5 studs of any grade -- in the BVA/KC scheme. It's a major reason why Rupert's Fund money goes as a priority for males over 5, to help breeders get those critical dogs scanned. :)

But breeders -- who definitely have studs age 5 and over! -- need to be the ones making the decision to scan them -- ad clearly, they are not, or are not submitting results. The near impossibility of finding scanned A studs much less A grade older studs -- or even any scanned studs full stop -- is a constantly voiced worry from breeders. Only the breeders owning such dogs can solve that issue though.

It would seem to me that a very obvious step the clubs themselves could take would be to raise funds to cover the cost of or even half the cost of members submitting scans to the BVA. If primarily pet owners could raise over £20,000 in barely over two years for Rupert's Fund, almost all of which has gone and continues to go to directly benefit individual breeders by paying for their scans, surely the clubs could raise a similar fund themselves nationally to cover those BVA scan submission costs? :confused:

sins
10th May 2012, 11:34 PM
The situation with "A" studs has changed dramatically in the last year.
I don't think there's any problem finding an "A" dog even without central canal dilation.The issue now is how many of today's "A"s will be tomorrow's over 5 "SM0a" or "SM1a." You'll find the young dogs at all levels in the showring now with encouraging scans.It's a matter of waiting for those dogs to reach the age to come under Rupertsfund.
Another cavalier was scanned this week under RF, a bitch though,but a good scan for research and a good result for the owner.
Rupertsfund is very well funded,and if the latest auction is anything to go by,there's no loss of momentum in the support for research from the pet owning stakeholders.
Sins