Report on the EAOD Research Project

[Journey]

Just curious if the HEF by chance received any sort of update? 

[Mark Billadeau]

No new info, getting owners to bring in their dogs for a research study during covid has proven challenging

[Journey]

New research then with new dogs in Dr Lohi's lab? Why the need for more dogs?

[Mark Billadeau]

Not new research, ongoing research running down leads towards identifying the causative mutation(s).  Beyond this I am not at liberty to discuss because of the confidentiality agreement (common practice in research) established at the onset of the research.

[Journey]

This confidentiality agreement? Would that be the one where he was to give all the data to the HEF as well? Thought that was nullified a long time ago...

[Mark Billadeau]

Where did you get the idea that the agreement between HEF and Lohi is nullified?

When there is new information that we can share; it will be posted.

[Journey]

When the test was made available and Lohi and Mars have a monopoly and we have no choice due to no publication. However,  Wisdom/MDD has far exceeded Verizon and Comcast for worst customer service ever. There are also 2 more tested  "carriers" that are deaf, BAER tested...but there's been zero follow up,  for 2 years, with the owners of these "outliers". If the agreement hasn't been nullified then my apologies,  that's one agreement that maybe shouldn't have been made seeing the predicament folks are in.

[Mark Billadeau]

No causative mutation has been found to be published.

[Journey]

So that means the linkage test can't be published? Or is that "won't"? The monopoly is still holding, holding owners/breeders hostage which can result in breeding of clear only due to the unknown. Or breedings with no testing...

[Mark Billadeau]

I do not know if editors and reviewers of genetic journals believe if these types of genetic tests and the supporting data are worthy of being published.  I (and others not in the field of genetic research) will have to trust those in the field to answer that question.

[Journey]

If they're not worthy of publication  what makes them worthy to be used in real life? Wasn't the CEA test originally a linkage test? 

[Mark Billadeau]

The cea test, as far as I know, has always been for the causative mutation.

 

Go reread the statement the HEF put out on this test.

[Journey]

11 minutes ago, Mark Billadeau said:

The cea test, as far as I know, has always been for the causative mutation.

 

Go reread the statement the HEF put out on this test.

I've read it, many times.

 

My understanding is the CEA test is for CH, not colobomas, and dogs don't go blind from CH, only colobomas and not always.

[Mark Billadeau]

How did the 3rd paragraph start?

[Journey]

Ah, it says "never question the HEF or ask for anything, they'll tell you what they deem necessary, when they deem it necessary"

[Journey]

Interesting and very good news for them!

 

https://embarkvet.com/resources/blog/rhodesian-ridgeback-deafness/

[Journey]

On 6/25/2019 at 4:34 PM, Eileen Stein said:

This said, I hold no preference for labs that offer panel testing only -- just recognizing the realities.  HEF did insist that the researchers publish their results for the very reason of ensuring that no one testing company could have a monopoly on a test.  I cannot predict when publication will occur in this case -- I don't believe anyone involved could do so --  but I strongly believe it will be within 6 months and I feel sure it will not be multiple years.

Odd how excited everyone was 3 years ago... Do we have any news at all recently? We've been held hostage by Mars for coming 3 years now. I think it would be safe to say that the reputation of MDD/OS is probably below that of Comcast and Verizon. The last statement put out by Mars, ironically it had no date on it, though it too did say they hope to publish within a year. 

[Journey]

So I hear that as of right now still no causative mutation has been found. I suppose this also means no publication coming either. What are we at now, going into year 4 and Mars is making a killing..

[Journey]

Based on over 10k dogs tested since inception,  Mars has made at least 1.25 million dollars on this "marker" test.

New figures from the lab today show (not included the 2k plus from pre 10/2020);

"Early Adult Onset Deafness in Border Collie - total dogs tested 10/2020-8/2022 = 8572

Copies 0
# 5850
Frequency 68.25%

Copies 1
# 2437
Frequency 28.43%

Copies 2
# 285
Frequency 3.32%

Total results provided 8572"

[Journey]

Any updates at all? Has there been any communication even between the HEF and Dr. Lohi? Knowing that a causative mutation is not necessary to publish sure would be nice to see something from him published soon.

[Eileen Stein]

I couldn’t agree more.  Wish I had something to report, but I don’t.  Dr. Lohi has stated an intention to publish what they have now, but it hasn’t happened.

[Journey]

3 hours ago, Eileen Stein said:

I couldn’t agree more.  Wish I had something to report, but I don’t.  Dr. Lohi has stated an intention to publish what they have now, but it hasn’t happened.

Thanks Eileen..sad statement that the HEF still doesn't have anything too. The MDD/OS test is tracking extremely accurate from what little we've seen. Unfortunately,  now with other labs offering it based on the 2012 Yokohama paper, folks are getting a rude wakeup and more and more carriers and affected are coming to light. I hope at this point the ABCA and the HEF are not giving Dr. Lohi any more money. 

[Journey]

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?

 

 

[Eileen Stein]

2 hours ago, Journey said:

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

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? 

 

Well no, Karen, we can't say this because we don't know it to be true.  We have no data which would support a statement that the test is proving to be uncannily accurate with "at risk" dogs.  If you have such data, I can understand why you would want to make it known.  How many of the 426 (source?) dogs with 2 copies do you actually know to be deaf prior to 8-9 years of age?  What knowledge do you have of the hearing status of the rest of those 426 dogs?

It would be very much to the liking of the HEF to actually help the dogs and breeders.  That is our purpose for existing.  We just do not currently have a basis for making claims about the accuracy of the test, and no one regrets that more than I do. 

[Journey]

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.