DNA tests and Laboratories

[mijke]

Thanks for all the info!

Because I know that groups of several breeds did get problems with research labs and university’s (about rights, prices aso) I still have some comments and questions:

Test
Of course I will cooperate with such research (like I did tell you before). But not with € 300 for each dog!

• Has the university already a validated HD test for an other breed?
• Is this the price of € 300 for an (already for CsW validated) real test?
  
• Or is this a price for research and validation of the test for CsW?

Because for me it would be crazy to pay as an owner such a price for research!
For example:
In other countries there are also labs and university’s working on DNA test for HD. And theses research labs are asking EDTA blood but owners do not have to pay for research!
The university Maisons-Alfort in France is working on a DNA test for PRA special for CsW, owners can send blood, but do not have to pay for research.
Before the dwarfism test was validated for CsW, all owners of carriers could send EDTA blood for free for the research.
And only when the test was real validated and working for CsW, the owners has to pay for the test (about € 100)

Storage
When people pay € 7 for storage a blood sample it is a low price
But what are the arrangements with the lab about this storage??

For example:

• For how long is the storage?
• Who is the owner of the blood sample? The owner? The group that manage the data? The lab?
• And who can decide for what tests the blood is used in future?
• Which other test this university research lab has for CsW breed?
• Can an owner or the group (who manage the data) decide which test will be done with this blood?
• When an owner or the manage group wants to do a test of this storage blood in an other lab, what do they count for distillate DNA and sending to an other lab?

My suggestion for an international DNA research database for CsW breed, was based on an international group (of breeding clubs) that can manage this database for the health of the whole population.
But also to provide that owners have to send blood for every new test, or has to pay a lot for research or tests!

When an international “manage group” has a lot of blood samples of the same breed in storage, they are very interesting for several labs!!
So such an int. group can negotiate with labs for developing/research of tests. And then they can negotiate with labs for quantum discount for tests!

And I hope the German initiative will work out in this way!

[Juniorwolf]

Mijke thanks a lot for your last post
I had some of the same questions and think your idea sounds very sensible and gives my full support to this...
Ofcourse I will be happy to send blood samples too, but only when the best solution have been found and people can agree on working internationally together on this solution

I have already send bloodsample for Pituitary dwarfism and are now waiting for answer and in the beginning of this week I made eyetest(17 different eye diseases incl. PRA) for both of my dogs and they were both free ...but I would appreciate a DNA test for both PRA and HD/ED as well.

Greetings Rolf

I don't even have a CsV yet, but I just want to say that am continually impressed with everyone involved in developing this breed. There are so many medical and genetic things we know these days, and it's wonderful to see people at the birth of a new breed taking advantage of everything science has to offer. I truly believe that this is the way people should be developing new breeds in the future, to avoid the mistakes made with purebred dogs in the past.

So, thank you for all your hard work!

[michaelundinaeichhorn]

Hello Mijke,
thank you for your post, you are I think at the moment the most experienced person for this questions.

Originally Posted by mijke

Thanks for all the info!

Because I know that groups of several breeds did get problems with research labs and university’s (about rights, prices aso) I still have some comments and questions:

Test
Of course I will cooperate with such research (like I did tell you before). But not with € 300 for each dog!

• Has the university already a validated HD test for an other breed?
• Is this the price of € 300 for an (already for CsW validated) real test?
• Or is this a price for research and validation of the test for CsW?

There is a validated test for GSD they evaluated and that is working.

I also think 300 Euros is definetly too much for most of us. The lab didn´t tell me a price, I wanted to have at least some information and asked what could be the highest price we talk about, they themself did mention directly the possibilty of funds and said it is something that can be talked about.
They will start to discuss prices when they have proof that we are able to get the first 24 dogs (we all know there is often much enthusiasm in the beginning but nobody left in the end) and on their homepage they are looking for blood samples for HD, ED, Epilepsy.
So I started with asking for dogs, when we have enough for the first step of 24 we will be able to get more answers and I don´t think we should send any blood samples before this question is cleared. but I will try to get more answers tomorrow because talking about ist there occured more questions.

Originally Posted by mijke

For example:
In other countries there are also labs and university’s working on DNA test for HD. And theses research labs are asking EDTA blood but owners do not have to pay for research!
The university Maisons-Alfort in France is working on a DNA test for PRA special for CsW, owners can send blood, but do not have to pay for research.
Before the dwarfism test was validated for CsW, all owners of carriers could send EDTA blood for free for the research.
And only when the test was real validated and working for CsW, the owners has to pay for the test (about € 100)

This is good to know and it also shows the problem of international communication. I think we should in general look for dogs and owners that want to join in. HD is one of the main problems and to have a test would be very good. If we have in general a group of persons that are willing to undergo all this we can start to ask the different labs and look for possiblity, working tests and prices.

Originally Posted by mijke

Storage
When people pay € 7 for storage a blood sample it is a low price
But what are the arrangements with the lab about this storage??

For example:

• For how long is the storage?
• Who is the owner of the blood sample? The owner? The group that manage the data? The lab?
• And who can decide for what tests the blood is used in future?
• Which other test this university research lab has for CsW breed?
• Can an owner or the group (who manage the data) decide which test will be done with this blood?

The 7 Euros are for storage, DNA-Isolation and the management of the samples, there are no further costs for that. It should be possible to use this database for every genetic test provided. I will ask for ED and Epilepsy and of course for the rest of your questions.

They work the following way: With the data they get and the DNA-data they form a database for the breed, if it is representativ they look for the markers and make a markerset for a genom breeding valuation of the dogs, then they varify this markerset again on a group of dogs and build up a selction program for the breeding clubs.

Originally Posted by mijke

My suggestion for an international DNA research database for CsW breed, was based on an international group (of breeding clubs) that can manage this database for the health of the whole population.
But also to provide that owners have to send blood for every new test, or has to pay a lot for research or tests!

When an international “manage group” has a lot of blood samples of the same breed in storage, they are very interesting for several labs!!
So such an int. group can negotiate with labs for developing/research of tests. And then they can negotiate with labs for quantum discount for tests!

And I hope the German initiative will work out in this way!

As far as I did understand the program this would be possible with this University and they won´t care about which country and would work out the management for the Clubs. But anyway this would have to be done in a lab, no breeding club can make a storage itself. So this is at least a question of which lab would be best looking at the costs and the tests they provide and the cooperation they offer. So maybe for a start it would be a good idea if every known lab would be asked for this question. And I personally think it will not be possible to get this working with Clubs alone there should be a scientific management to prevent politic problems, we should be realistic in this.
I think Hannover is a good suggestion but if we find anything better, great! I don´t care which country.
But as far as I know at this moment Hannover is the only one with a ready validated test for HD.
And of course to ask for all of this we would need to know about of how many dogs we can offer.

Ina

[michaelundinaeichhorn]

Originally Posted by mijke

• Has the university already a validated HD test for an other breed?

There is a validated test for GSD

• Is this the price of € 300 for an (already for CsW validated) real test?

The price for the 24 dogs is 7 Euros for the storage from the 200 on it is 300 per dog

• Or is this a price for research and validation of the test for CsW?

Because for me it would be crazy to pay as an owner such a price for research!

The laboratory told me that is the price they have to take for research but there is a good chance to get to funds
For example:
In other countries there are also labs and university’s working on DNA test for HD. And theses research labs are asking EDTA blood but owners do not have to pay for research!
The university Maisons-Alfort in France is working on a DNA test for PRA special for CsW, owners can send blood, but do not have to pay for research.
Before the dwarfism test was validated for CsW, all owners of carriers could send EDTA blood for free for the research.
And only when the test was real validated and working for CsW, the owners has to pay for the test (about € 100)
German Universities have a strong lack of money
Storage
When people pay € 7 for storage a blood sample it is a low price
But what are the arrangements with the lab about this storage??


For example:

• For how long is the storage?

As long as we want

• Who is the owner of the blood sample? The owner? The group that manage the data? The lab?

The lab

• And who can decide for what tests the blood is used in future?

The lab but you can say you don´t want your blood to be used for anything else

• Which other test this university research lab has for CsW breed?

interesting ones are at the moment ED and Epilepsy, the procedure is the same

• Can an owner or the group (who manage the data) decide which test will be done with this blood?

Yes, you can say that by sending the blood in the beginning

• When an owner or the manage group wants to do a test of this storage blood in an other lab, what do they count for distillate DNA and sending to an other lab?

It is a no problem to send necessary samples to other labs to moderate costs, they couldn´t tell me the cost directly but it isn´t much.

My suggestion for an international DNA research database for CsW breed, was based on an international group (of breeding clubs) that can manage this database for the health of the whole population.
But also to provide that owners have to send blood for every new test, or has to pay a lot for research or tests!
You don´t have to send in new blood but if you want to have any new results

When an international “manage group” has a lot of blood samples of the same breed in storage, they are very interesting for several labs!!
So such an int. group can negotiate with labs for developing/research of tests. And then they can negotiate with labs for quantum discount for tests!

And I hope the German initiative will work out in this way!

As I got to know the last days the German Club is working on this and they want to talk about costs and procedure themself so we can wait and see.
But I think in general it would be a good idea if everybody knowing about labs that do research and databases should ask them the same questions or things will simply take to long and we all should keep in touch and talk about results.
And still it would be good to know who is interested in this programm. I already got contacted by several people doing a great job, we should carry on with this it will speed up things a lot when we got the lab fixed.

Ina

[Mikael]

As I understand from an earlier topic on this subject, the DNA test for HD is mush more complex then the Dwarf DNA test, and will take mush more research, lab time and dogs (200)… and I think the price therefore is not so high compered to the Dwarf test…

But I understand it will not be easy to get 200 owners to pay 300 euro, especially when some has more then one dog, and it will not be possible for owners in some country’s to pay this neither…

What I’m trying to say is, I do not think any other lab will do or can do a DNA test for the CsW breed for less than 300 euro/dog… not today anyway… (if not the lab Mijke knows can do it for less)

But I think that Ina has find the right lab, as it already have a funtion HD DNA test for GSD, and work whit DNA tests for ED and epilepsy to…

I think we are to try to find a way to get funds, but I do not think that will be easy, unless the lab can help us whit that…

I do not know the price for normal HD x-ray in Germany, but in Sweden I think it is about 200 euro including the official result… therefore by Swedish standard a HD DNA test for 300 euro sounds reasonable...

Best regards / Mikael

If you are all having issues with paying that much to fund the research, why not try something like fundraisers to help pay? Hosting things like a dog walk where people pay an amount like $20 (whatever an equivalent for you would be) to participate is a great way to raise money like that. All you'd have to do is find a place to do it, throw a cheap lunch together, and explain to people why it's a good cause. You can also encourage participants to raise extra money on their own to help donate.

Also, would it be possible to take donations at dog shows? You could explain to people that the money goes towards genetic HD research.

There's no reason the money for the research has to be placed souly on the owners of the dogs. This type of research benefits EVERY dog breed, because all research has to start somewhere. I'm not sure how feasible all this would be for all of you (I know this type of thing is very common in the US, though) but I figured I'd throw it out there for you, just in case.

[Mikael]

Originally Posted by Vicky

If you are all having issues with paying that much to fund the research, why not try something like fundraisers to help pay? Hosting things like a dog walk where people pay an amount like $20 (whatever an equivalent for you would be) to participate is a great way to raise money like that. All you'd have to do is find a place to do it, throw a cheap lunch together, and explain to people why it's a good cause. You can also encourage participants to raise extra money on their own to help donate.

Also, would it be possible to take donations at dog shows? You could explain to people that the money goes towards genetic HD research.

There's no reason the money for the research has to be placed souly on the owners of the dogs. This type of research benefits EVERY dog breed, because all research has to start somewhere. I'm not sure how feasible all this would be for all of you (I know this type of thing is very common in the US, though) but I figured I'd throw it out there for you, just in case.

In Sweden we have about five CsV, and most people do not know that the breed exist at all, most of the people at the Swedish Kennel Club think it is not a recognized breed, and some insurance company´s will not insure are hybrid´s

I think it might work better whit a big breed like GSD... but the CsW breed is a very small and reare breed

But I did ask people here before if we should start a CsV fundation, for future blood lines... the answer I got, was that there was no money needed So maybe we can ask the clubs to pay

Or start a CsV fundation now fore future health problems and blood lines ???

Best regards / Mikael

Originally Posted by Mikael

In Sweden we have about five CsV, and most people do not know that the breed exist at all, most of the people at the Swedish Kennel Club think it is not a recognized breed, and some insurance company´s will not insure are hybrid´s

I think it might work better whit a big breed like GSD... but the CsW breed is a very small and reare breed

But I did ask people here before if we should start a CsV fundation, for future blood lines... the answer I got, was that there was no money needed So maybe we can ask the clubs to pay

Or start a CsV fundation now fore future health problems and blood lines ???

Best regards / Mikael

I don't think it necessarily needs to be a whole big organization or anything, just dog owners/lovers of any breed that want to give a little something to help research. People give donations all the time to help fund research for all sorts of diseases that face humans, I think people might be interested to help fund research for dogs as well. Just getting people together for one day to raise money wouldn't have to be a whole start of an organization or anything. But, I can see a problem if it's in a general population that is very spread out, this sort of thing works best in highly populated areas, like urban cities or suburbs, that's why I suggested hitting up people at dog shows.

All I'm saying, is it doesn't just have to be for CsV owners. It doesn't even have to be by people that know what the breed even IS, the fundraising could help spread awareness of the breed, as well!

[mijke]

Ina: There is a validated test for GSD
Mijke: • Is this the price of € 300 for an (already for CsW validated) real test?
Ina: The price for the 24 dogs is 7 Euros for the storage from the 200 on it is 300 per dog

And all the people who want to pay € 300 for each dog for research, what do they have to pay when the test is really validated?? (what is the price for GSD owners for the test?)
Or then the new test is for FREE for these owners??

Mijke: • Who is the owner of the blood sample? The owner? The group that manage the data? The lab?
Ina: The lab

Hmmmmm…. Personal I am never happy with such deals when a lab is a owner of a database….

Mijke: • And who can decide for what tests the blood is used in future?
Ina: The lab but you can say you don´t want your blood to be used for anything else

That is not the problem I mean….
All labs/university’s who are asking 4ml EDTA blood for a specific test are also collecting blood for themselves. And they use this for all kind of research.

But when an individual owner storage blood in a data base, this owner can every time decide by himself which test he want to do from that blood (in all kind of labs). And he can ask the storage lab to distillate DNA and send to another lab.

The same a group of owners of an DNA research data base can do the same. But they also can ask several labs to do research for a specific test because they have a lot of blood samples (and that is interesting for a lab)

BUT when a lab is an owner they can decidewhat they want to do with the blood! And in future it is possible that they do not want to send distelated DNA of such a group to an other lab for test or research.

Originally Posted by Mikael

As I understand from an earlier topic on this subject, the DNA test for HD is mush more complex then the Dwarf DNA test, and will take mush more research, lab time and dogs (200)… and I think the price therefore is not so high compered to the Dwarf test…

Maybe I did understand wrong, but I think this is not the price for a HD test! (Because there is yet not a HD test validated for CsW)
I think this price is only for research, so they can validate the test in future.

And of course when there ever will be such a HD test in future that makes that a owner do not have to make x-rays, then the price is reasonable

Originally Posted by Mikael

What I’m trying to say is, I do not think any other lab will do or can do a DNA test for the CsW breed for less than 300 euro/dog… not today anyway… (if not the lab Mijke knows can do it for less)

There will be not one lab that will do a DNA test for a disease for Free!
But there are labs that are doing research for free! (like the lab in Frence that is working on PRA test specific for CsW)
And only when they have a validated test for the breed owners have to pay for such a test.

[Mikael]

Originally Posted by mijke

Maybe I did understand wrong, but I think this is not the price for a HD test! (Because there is yet not a HD test validated for CsW)
I think this price is only for research, so they can validate the test in future.

And of course when there ever will be such a HD test in future that makes that a owner do not have to make x-rays, then the price is reasonable

No, I think you got it all right, it will be research the first 200 dogs and maybe more, if they not can find some short cut (resemblance from the GSD tests) to make it whit less individuals, as I understand that is why they wont 24 dogs to se if there is a resemblance to the DNA HD pattern on the two breeds

But if they need 200 dogs or more that is about all owners and breeders that are interested to do the HD DNA test today, and after that it will not be eny big money to earn for the lab, just a cople of tests per year, I think that is way they will demand money from the start ???

As I understan there is about 7000 CsW in the world, the number of GSD is probably way over 1´000´000 dogs, therefore I think that most labs that do HD DNA research for a small breed like the CsW will demand money from the start...

But if we can find a good lab that do HD DNA research and wont a small population to do research on, I will be very happy to pay less or the 300 euro after we knows that the DNA test will be valid and approved

But I think are chances are very small, and we will have to pay the 300 euro from the start if we can not find any funds...

But I agree, that we must be the one to own the data base and blood samples, if the lab wonts to do more research that might help are breed maybe we can send two blood samples from the start ? one for us and one for them ??? and mayby we can get a discount on are 300 euro in exchange ???

Best regards / Mikael

[Mikael]

Hello again

Just wonder how the results from a HD DNA test would look like ???

Is it just positive or negative, or can one see the degrease and risks in % ???

Can somebody link to a HD DNA test result from a GSD ???

Kindly regards / Mikael