Report on the EAOD Research Project

[Pearse]

6 hours ago, Journey said:

Not to face disappointment again but still no word on anything from Dr Lohi?

On a different aspect/issue..will the HEF come out with a new letter wrt this test? To have USBCHA representatives saying the science isn't there and the test is unreliable isn't helping the breed at all. Based on the recent numbers I was given I feel the HEF should revisit this and say something positive based on results, not unknowns. 

0 copies - 7,936

1 copy - 3,547

2 copies - 426

I personally know of 1, 1 dog in the states that has tested "at risk" and has a good BAER test at 10 years old. All the others I know of that are tested "at risk" are deaf/going deaf. This speaks volumes. While it may not be to the liking of the HEF, can we put aside the issue of Dr Lohi breaking contracts, not giving data/info he was supposed to, and move on to actually helping the dogs and breeders? People may not like it but the test is proving to be uncannily accurate with "at risk" dogs. Surely the HEF can say this, no? And say it loud enough so people think before they trash what is helping?

 

 

Exactly which USBCHA representatives are making statements about the EOD test? I'm not aware of the USBCHA taking a position on this. If you have information that I'm not aware of, I'd appreciate it if you would share it with me please.

Thank you.

Pearse Ward
President, USBCHA

[Journey]

@Pearse, I will not share it. I will talk to the person that told me and ask them to reach out to you though. Regardless of a position or lack thereof,  any options you see to get the testing a broader acceptance based on what's been seen for the past 4 years?

[Eileen Stein]

4 hours ago, Journey said:

Reaching out to MDD/OS would be a start. As much we all hate the monopoly factor they've been good to me in all the dealings I've had with them. I'm sure they have many of the answers you're seeking. That's just it, go look, ask, movement of some sort may produce productive insights. Sitting still has gotten us no where for how many years? To have litters born recently,  whole litters, at risk, is uncalled for. Yes, it's happening. 

What makes you think HEF has been “sitting still” and not “reaching out”?  What makes you “sure they have many of the answers [we’re] seeking”?

[Eileen Stein]

22 minutes ago, Journey said:

. . . .  Regardless of a position or lack thereof,  any options you see to get the testing a broader acceptance based on what's been seen for the past 4 years?

What HAS  been seen for the past 4 years?  I asked you what concrete information/data you have and you haven’t replied.

[Journey]

Yes, I did reply. Check your email. What's been seen are the results people are seeing based on testing or not. The at risk dogs do have hearing loss. Agree, the carriers are a bit murkier but the test so far is pretty well nailing the deaf ones. Concrete data, none. First hand info from owners, lots. Owners that import 2 year olds only to test, get at risk results, BAER test, go to Fetch Labs an get in depth data on the hearing loss that's already occurred..owners that have at risk results, BAER test annually,  3 years later their dog fails the BAER, under 6 years of age. I cant give you the data you are asking for. Optimal Selection though probably can.

[Pearse]

1 hour ago, Journey said:

@Pearse, I will not share it. I will talk to the person that told me and ask them to reach out to you though. Regardless of a position or lack thereof,  any options you see to get the testing a broader acceptance based on what's been seen for the past 4 years?

That's fine but just to be clear, the USBCHA has no position on the validity or lack thereof of the current state of research or of any currently available test for EOD simply because we are not aware of any information that has not already been shared by ABCA/HEF.

Speaking personally, and not on behalf of the USBCHA, but based on many years of doing molecular biology research I would have reservations about basing breeding decisions on testing that is reliant on what has been published to date. If someone who is offering testing has better data to support a test with higher specificity, then they should publish it. Again, that's my personal opinion, not the position of the USBCHA.

[Journey]

@PearseI went back and asked more questions..what was said was pretty much verbatim of a part of the HEF statement from 2019. What they couldn't tell me, they didn't recall, was if the caveat was also said. This was said.."The ABCA HEF does not endorse this marker test, nor do we encourage people to test at this time, before the causative mutation is found" the caveat "But at the same time, we are not telling people not to test" they didn't recall as a couple of folks have had dealings with EOAD dogs.  So, not what I was lead to believe initially, just still repeating pieces of the HEF statement, a 4 year old statement that I think should be updated based on all the testing results for the past 4 years. Just wanted to clarify for you. 

[Eileen Stein]

On 5/10/2023 at 11:38 PM, Journey said:

What's been seen are the results people are seeing based on testing or not. The at risk dogs do have hearing loss. Agree, the carriers are a bit murkier but the test so far is pretty well nailing the deaf ones. Concrete data, none. First hand info from owners, lots. . . .  I can’t give you the data you are asking for.  Optical Selection though probably can.

How many are “lots”?

What makes you think Optimal Selection has this data?  Have they told you they have it?

[Journey]

7 hours ago, Eileen Stein said:

How many are “lots”?

What makes you think Optimal Selection has this data?  Have they told you they have it?

Whatever number I say it won't be good enough.

After 4 years I feel the HEF should at least try to speak to MDD/OS and see what they can tell you. The mess of the logistics wrt MDD/OS,  genescoper,  University of Helsinki..I don't really know the truth of all of it. I know the HEF was aware of this upfront, it wasn't a problem until Lohi didn't hold up his end of the agreement. You won't know until you ask MDD/OS the specific questions you're looking for answers too. I'd say they don't have it and that Lohi hasn't shared this hard data with anyone. They do have numbers, the ones I posted above are directly from them. What about asking the community? Ask their results and if they have an at risk dog what their BAER tests indicate? MDD/OS may have this..they surveyed for info a while back. After 4 years and seeing the results we're seeing I still think the HEF needs to look into modifying their stance. I could be wrong but when others are still parroting the 2019 statement and litters of affected are being born, that could have been avoided, it's not helping the dogs, which is the point of the HEF, isn't it?

[Eileen Stein]

5 hours ago, Journey said:

Whatever number I say it won't be good enough.

No, it won’t, and you know why.  You know as well as I do that the handful of dogs whose results you’re aware of wouldn’t come within a mile of statistical significance.  Yes, MDD/OS does have numbers, if by numbers you mean they know how many dogs they’ve tested, and how many of them have 0, 1 or 2 copies of the markers they’re using.  But they don’t have numbers correlating those test results to to those dogs’ hearing/deafness history in any meaningful way.  If you don’t believe me, ask them next time you’re  in touch with them.  Don’t you think if they had data supporting the validity of their test they would be only too happy to publicize it?  

And without that data, HEF is in no position to vouch for the accuracy of their test.  We all fervently wish we had a basis on which HEF could update its earlier statement regarding the test.  But wishing does not make it so.

[Journey]

Ok, however,  my "handful" is more than the HEF has. 

I see the HEF still thinks MDD/OS are one in the same with University of Helsinki. This much I know isn't the case. MDD/OS has the test. Why they can't share I'd think would be due to Lohi. 

With as few of the at risk that have been found it wouldn't be to difficult to reach out to the owners and ask about their BAER status, collaborate with MDD/OS to reach them? I think you'd be surprised.

If the HEF can't get beyond this and the requirement for hard data that no one has access to except the person the HEF paid, it isn't helping one dog at all now. Affected litters continue and they shouldn't. 

[Eileen Stein]

What on earth makes you think “the HEF still thinks MDD/OS are one and the same with University of Helsinki”?  What does that even mean?  The HEF does not now think, and never has thought, that MDD/OS are one and the same with the University of Helsinki.

I think we’ve taken this topic about as far as we can.  I’ve done my best to explain to you why the HEF is not able to make a recommendation about the test in the absence of hard data.  I understand that you disagree.  So there we are.

 

[Journey]

Curious,  after so many years have gone by, is there really a contract between the HEF and Dr Lohi? If so, how does someone go about seeing it? What we see and hear these days is "the HEF said..." and even members of the HEF are saying "show me the publication data" when we all know good and well there isn't any.  No contract would answer so many questions. @Mark Billadeau

@Eileen Stein

[Journey]

The silence is deafening. 

[Eileen Stein]

To see the contract for the HEF EAOD research project, please go to the Deafness Research page on the HEF website, scroll to the bottom, and click on the first of the listed documents.

[Journey]

55 minutes ago, Eileen Stein said:

To see the contract for the HEF EAOD research project, please go to the Deafness Research page on the HEF website, scroll to the bottom, and click on the first of the listed documents.

Thank you so much @Eileen Stein!