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