Curious why so many embrace the DM DNA test? - Page 15

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Abby Normal

by Abby Normal on 21 April 2012 - 16:04

hillelunteren   What I meant was an active website belonging to Dr Clemmons himself. The information on Dog2doc is incredibly useful and is still used as the Clemmons protocol, but is reproduced in various places and was written in 1998 and updated in 2002.

Bearing in mind that Dr Clemmons had an experimental programme for which he was recruiting 6 GSDs in 2010, I was wondering why he did not have a website that included this information. There doesn't appear to be anything obvious in the public domain to suggest that he is still actively involved in DM research. If funding is needed people need to know research is happening!

BTW I suggested that this may be a 'personal' project of Dr Clemmons, and this is more a hypothesis than a fact.  I hypothesised this as to why he may choose not to have a website and why he may not be in a position to publicly ask for funding. I really don't know if that is the case or not.

Any work undertaken by Dr Clemmons is of tremendous value and is a great loss if it doesn't continue and reach those who need it most.

by Blitzen on 21 April 2012 - 21:04

I'm thinking we should be thankful that we have 2 recognized doctors interested enough in DM and our breed to spend so much of their precious time researching this disease for us. In either case, ALS or MS, it should be a win-win situation for the breed as either could open up the possibility of grants from the human world. It's always a good thing when there is an animal model for a human disease.

To further sweeten the pot, we have the great benefit of opinions from both sides of the research spectrum.






Hundmutter

by Hundmutter on 29 April 2012 - 09:04

Abby posed what seems an extremely sensible question but nobody has yet tried to answer it:
Does anyone know why Dr Clemmons didn't choose or was unable to put a patent on his work ?

by beetree on 29 April 2012 - 10:04

If he was funded by being employed somehow, via the Univ. of FLA, it would not be his intellectual property to patent. I have tried to understand this bit of oddness myself.  That scenario makes the most sense to me as there is no way I can see him legally being funded as an individual, for profit, researcher by a 501 c 3 organization. 

Abby Normal

by Abby Normal on 29 April 2012 - 14:04

Thanks Hundmutter for bringing that question back up. I got somewhat disheartened at the way the thread was going and just wanted to let it go, but it is still a question that I feel has great relevance, especially as we now seem to be deprived of Dr Clemmons research.

Beetree, if he was employed by the University, couldn't they have patented the work, wouldn't it be in their interest to do so, as in the case of UofM with their DM test? Could they not have patented the Flash test and any ongoing research?

I do still wonder about this. It's very muddy.



by beetree on 29 April 2012 - 14:04

Those are the details an updated report on the research and any process discoveries would probably be able to clarify. I'm not sure how a University would handle patents vs. the private sector, but let's just say there would usually be some kind of contractural clause that one would sign giving up such rights to an individual patent when hired. It is hard to be clear because once again, we land square into the realm of speculation as to the structure of this particular research, and who has been the leader in this.


by dsurber on 30 April 2012 - 18:04

The OFA web site has been updated to state that there have been two dogs that were diagnosed with DM but were not homozygous for the SOD1 mutation detected by the UM test. So we know that the UM test does not cover all forms of DM. In particular, just because a dog is "clear" by the UM test does not me the dog cannot develop DM.

http://www.offa.org/dnatesting/dmexplanation.html

Note that the test is now described as being for the most common form of DM. That means the most common form across all dogs. Another form of the disease *may* be more common in a particular breed.

Of the two dogs one was a Bernese Mountain Dog that was homozygous for a different SOD1 mutation. The other was my GSD. He was homozygous for the normal form of the SOD1 gene. The genetic cause of his DM is unknown but UM is working on it. Again my dog is "clear" by the UM test but was diagnosed by UM as having DM.

Breeders should not state that their dogs cannot develop DM. The UM test only covers one form of the disease. There are at least two other forms, one of which is known to occur in GSDs and may even be common in GSDs. At the current state of knowledge there is no way to determine that a particular dog cannot develop DM. Any breeder who continues to advertise such is acting out of ignorance or intent to decieve. UM says that that the test detects the genetic cause for "the most common form of the disease". It may be reasonable to advertise "dogs that are free of the most common form of DM". I personally find that wording troubling as we just don't know how common the other forms are in different breeds.

The form of DM detected by the UM test does not affect the sensory nerves very much. My GSD had an almost complete loss of sensation that progressed with the paralysis. I have talked to several other GSD owners whose dogs showed a similar profound, prgressive loss of sensation. I have been in correspondence with researchers at UM. They are very interested in tracking down this alternate form of the disease. To do that they need more data. If you have a dog with DM who shows a profound and progressive loss of sensation please have him/her tested. If the result is normal/normal please contact Liz Hansen at UM immediately.

Douglas

Hundmutter

by Hundmutter on 01 May 2012 - 08:05

Abby  -  I can't find the references in what I've got to hand at the moment; do you happen to know what research it is that Dot. Cullum and the GSDInfo Group is connected with ?  Do their contacts include the projects and testers m entioned here and related threads, or are they just sending money to people in Edinburgh ?  Wish I'd taken more notice when it was reported !

Abby Normal

by Abby Normal on 01 May 2012 - 11:05

Hundmutter
I am not sure either. I know they were supporting AF and EPI research, but I don't recall anything specifically related to DM being supported/funded through the group.  

by beetree on 01 May 2012 - 12:05

Douglas, my dog also had the aggressive form. Unfortunately,  I had never even heard of this site during the time we were going through the devastation of his disease. I hope anyone who is confronted with this situation will have the presence of mind to help UM with their research.

So many of us want the answers to be found.





 


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