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Thread: Swabs - DNA testing, Van Andel Research Institute

  1. #31
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    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. 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.

    Quote Originally Posted by Pat View Post
    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
    Cavaliers: Jaspar Lily Tansy Libby Mindy
    In memory: Lucy Leo
    Cavalier SM Information site:www.smcavaliers.com

  2. #32
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    Also they have stated this is ONLY for US based dogs -- not sure about Canada but they will not send swab kits abroad.
    Karlin
    Cavaliers: Jaspar Lily Tansy Libby Mindy
    In memory: Lucy Leo
    Cavalier SM Information site:www.smcavaliers.com

  3. #33
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    I emailed to request a kit when I first saw this and never heard back.
    Lani
    (a.k.a. Lucky's & Sparky's mom!)

  4. #34
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    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
    Anne Proud mother of Elton 5 and Angel Ella

  5. #35
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    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.

  6. #36
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    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.
    Karlin
    Cavaliers: Jaspar Lily Tansy Libby Mindy
    In memory: Lucy Leo
    Cavalier SM Information site:www.smcavaliers.com

  7. #37
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    Default Casually solicited owner information......The European EBVs

    Quote Originally Posted by Karlin View Post
    ; 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.
    Margaret C

    Cavaliers......Faith, The Ginger Tank and Woody.
    Japanese Chins.... Dandy, Benny, Bridgette and Hana.
    Remembered with love......... Tommy Tuppence and Fonzi

  8. #38
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    Quote Originally Posted by anniemac View Post
    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.
    Karlin
    Cavaliers: Jaspar Lily Tansy Libby Mindy
    In memory: Lucy Leo
    Cavalier SM Information site:www.smcavaliers.com

  9. #39
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    Quote Originally Posted by Karlin View Post
    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
    Pat B
    Atlanta, GA

  10. #40
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    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.
    Karlin
    Cavaliers: Jaspar Lily Tansy Libby Mindy
    In memory: Lucy Leo
    Cavalier SM Information site:www.smcavaliers.com

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