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goldleaf

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Reply with quote  #1 
Hi everyone,
Someone asked recently if there was a database of cystinuria tested dogs.  As far as I know, there isn't one.  I'd be happy to host one on the mastiffs.org site, but I wanted to get some feedback to see if there's any interest.

The information provided would be based on the information you provide to me, which would include your dogs name, your name, your kennel name, your contact information, and the results.  You would not need to send the report, and it would be based only on the information given to me.  There would have to be a disclaimer explaining this.

I've been thinking about this for awhile, so I'd love to hear your ideas and any feedback.  Pros, cons, etc....  

Thanks!!


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Reply with quote  #2 
I would love to see a database, but why would you not want the documentation to verify the dog is Neg?  Without that, please will still say, "Well they SAID he was Neg...."
If you require the proof, at least then when people see it can can say someone at least tried to verify the results, whether the owner doctored up the results or not, at least what you see and print is the best you can go on.  However I would also like to see the repetitive tests that that same dogs does.  In other words:  tested clear, 2005, 2006 and again 2008, 2009.....
Also would like to see it link to any litter mates as well as sire and dam, so a trail can be followed.  Wish I had time as this is what I would like to do.

Jan

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Patti

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Reply with quote  #3 
I agree with Jan..I don't want to see a witch hunt, but we could volunteer to post our dogs results "with documentation" .
For me, I have tested Bobby and his son, Bodie, just once last year, and yes they are negative, but will be testing again in the next month or so, and plan on repetitive testing. If we want to find answers, we owe it to the breed.

This is too important, I want to see official documentation. WHY NOT ?

Also, I have noticed a few people saying on their websites that their girls have tested neg for cystinuria...I thought we didn't have that test yet? I would jump on the chance to test my girls.
Can someone tell me when/where/how they tested? Was it blood or urine?
Any info would be appreciated!
I left a msg for Dr Giger today...hopefully I'll hear from him tomorrow.



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Kimberly

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Reply with quote  #4 

Quote:
Originally Posted by Patti

Also, I have noticed a few people saying on their websites that their girls have tested neg for cystinuria...I thought we didn't have that test yet? I would jump on the chance to test my girls.
Can someone tell me when/where/how they tested? Was it blood or urine?
Any info would be appreciated!
I left a msg for Dr Giger today...hopefully I'll hear from him tomorrow.


All girls test negative I think. So yes they tested negative. The test is the same for males. I believe I heard that it is still important to submit females for testing even though they may test negative but cant remember what the reason was.

I would like to see the database, and additionally since someone mentioned it in another thread what about if C+ if they are stone formers or not. Since you are making the database it couldnt hurt to add that info.

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Reply with quote  #5 
Hi Patti,

It is possible to add Bobby and Bodie's Cystinuria results to your OFA page along with all the other health testing.  You need to fill out the Genetic Disease Application and send with the UPenn results and $15 fee to OFA.  I have done that for Lucah and two of his male siblings.  I think they only list the year (or age) of the last test, though my boys have been tested 3 times. I believe it was $30 for 3 or more littermates.

I think UPenn should be the one to provide information for the data base of those testing negative (male or female) much like Optigen furnished the PRADNA testing information.  Since the send out emails to owners with the results, they could copy (at least the negative ones) to whoever is putting up the database, be it here or on the MCOA website.

I have tested all my dogs since 1997, males and females.  Since we still don't have a mode of inheritance for our breed, I think it is as important to test the girls as the boys.

We do need a Cystinuria database to make informed decisions about breeding and it would probably go a long way towards keeping focused on the problem instead of the gossip.

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EileenDurante

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Reply with quote  #6 
I agree with Jan & Patti. Proof should be required.
UPenn sends us a PDF file.
So why can't we put them up on the database as thumbnails ?


 
Attached Files
pdf 2485_Hummer_Durante.pdf (17.54 KB, 6 views)
pdf 2483_Brian_Durante.pdf (17.52 KB, 11 views)
pdf 2484_Gleason_Durante.pdf (17.54 KB, 19 views)


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steveoifer

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Reply with quote  #7 
MCOA INFO:

Cystinuria in Mastiffs

New website that summarizes canine cystinuria information: http://www.caninecystinuria.com/

NEW: Update on Cystinuria 8/28/03 Drs. Paula Henthorn and Urs Giger

Cystinuria FAQ Frequently Asked Questions

Statistics

Mastiffs tested for Cystinuria at UPenn via Urine Nitroprusside testing

Current cumulative statistics from 1999 through March 2007:

  • Total male dogs tested: 585
  • Total female dogs tested: 542
  • Positive male dogs: 58 (10%)
  • Positive female dogs: 1 (.18%)

Discussion

Cystinuria is a serious, potentially life threatening problem that affects the bladder, kidneys and urinary tract system and it has been found in mastiffs. Cystine stones can form in the urinary system of both males and females. This is particularly serious for males because of their anatomy. Treating a dog with Cystinuria for other types of stones can be deadly! Supplementing with acidifiers such as vitamin C can cause stones to form in Cystinuric mastiffs - please test BEFORE supplementing. Cystinuria is known to be an autosomal recessive hereditary disease in people and in Newfoundlands. There is currently research being done into the mode of inheritence in mastiffs. There is a simple urine test for Cystinuria which can be performed on pups as well as adults, please test your mastiffs, lets work on this problem NOW. The gene responsible for Cystinuria in Newfoundlands has been found and carriers can be detected as well as affected dogs. The gene for Cystinuria in Mastiffs is not the same and we need your help with data collection and fund raising in order to find it.

(1/02) Cystinuria Committee Update - Sex-Linked?

We are happy to report that the Mastiff community as a whole is becoming much more familiar with cystinuria, testing methods and why testing is important. Many responsible breeders are testing litters before placing puppies, and requesting or requiring that the pups be re-tested between 18 and 24 months as the research team at the University of Pennsylvania recommends. As most of you know, the test is a simple urine collection which does not require a vet visit but can easily be collected by the owner or breeder 2-4 hours after the dog has eaten. The sample is chilled or frozen and shipped overnight to the Duebler lab at Penn along with a form which is available on the mastiff.org site. Pups can be tested for a $10 charge per pup when submitted as a litter together. Puppies tested before maturity should be re-tested between 18 and 24 months of age for the best assurance of freedom from the disease. The urinary system of young puppies is of course immature and therefore it's best for all concerned to have both an early test and one at maturity for the best picture of urinary health.

In the way of news, the Penn database is over 200 dogs strong at present. Aided by the outstanding pedigree program designed and donated by Deb Jones, Dr. Paula Henthorn is able to research pedigrees of affecteds to try to determine the mode of inheritance of this disease. Interestingly, the ratio of affected males to females is quite uneven. Although the ratio of samples submitted is about fifty-fifty, the vast majority of affected Mastiffs are male. Dr. Henthorn would like to stress that we are still not in a position to label cystinuria with any given mode of inheritance in particular, so please keep that firmly in mind. This might be a good time however, to introduce the concept of sex linkage to those of you who have not heard of it yet, as this is one of several possibilities. It isn't as straightforward as autosomal recessive or dominant genetics.

To understand how a gene can be passed along in this way, one first needs to remember basic biology. Female mammals have two X chromosomes and males have one X and one Y chromosome. When a trait is sex-linked, it is associated with the X chromosome. That means that in the case of a sex-linked recessive gene, there would be a pattern of affecteds similar to what we are seeing in the Mastiff cystinuria study; the vast majority of affected dogs would be male. The reason for this is that as you know, it takes two copies of a recessive gene for the trait to show in the dog. Carriers would not (necessarily) appear to be affected. Since the Y chromosome, which differentiates males from females does not compete with the X chromosome, it would not require two copies of the mutant gene for the disease to be expressed. In other words, there is no second, normal copy of the gene to hide the mutant one. In the case of females, there is in fact a second copy of the same gene which would also have to be in the mutant form in order for the disease to be expressed. In this way, in traits which are sex-linked recessive, male mammals are never carriers of a sex-linked disease or trait. They are either affected or clear. Females, however, can be affected, clear or carrier.

Again, please keep in mind that this is only one of several possibilities for the genetic transmission of cystinuria in Mastiffs. More study is needed to finally determine what we are dealing with in this potentially fatal disease. Moreover, we are very much in need of more samples for the study. The more samples we have, the faster this team at Penn will get their work done and we will be on our way to having the tools to eliminate another genetic problem from our beloved breed. We are closer now than we have ever been before in reaching some important conclusions and being able to take the same steps to eliminate this disease from our breed in the same way as we are now making great strides to eliminate PRA. Thank you to all who continue to support the efforts of the Health Committee and Subcommittees.

Stories About Mastiffs With Cystinuria

Here are the perspectives of three people directly affected by this condition in their own Mastiffs. The first is Deb Jones, Chair of the Health Committee and MCOA Board member. Her beloved Hooch did develop potentially life-threatening stone blockage after almost nine years of living asymptomatically. Next is Lynda Piercy, MCOA member and breeder, who was on the ball and able to help Leo's family when he developed a blockage. Lastly is Sue Stebbins, owner of two Mastiffs of my breeding. It is the one completely unrelated to Baloo which is testing positive. Both Lynda and Sue have joined the cystinuria subcommittee and all three of these devoted Mastiff people have chosen to go public to help YOU.

Here is what they have to say:

Leo by Lynda Piercy Lynda Piercy has the perspective of breeder/stud owner being contacted by a concerned puppy owner. Her level of involvement is admirable.

Knowledge Is Power by Sue Stebbins This is from Sue Stebbins. Sue teaches first grade in her home town while attending school to finish her graduate degree and caring for her family.

Hooch by Deb Jones Deb Jones, after the loss of her beloved Hooch. I'm sure you can relate to one or more of these people. Please run this simple test on the Mastiffs you have at home in order to rule out the possibility of a sudden blockage in one of your dogs, and to increase the database at UPenn. No vet appointment or high fees involved. The test costs less than one bag of dog food or one show entry and can be done by yourself. Together, we will beat this thing. Please direct any general questions you might have about the research being done to any of the cystinuria subcommittee members rather than calling UPenn directly. The time the scientists spend answering basic questions takes away from their research and slows progress for all of us.

I'm sure you can relate to one or more of these people.

Please run this simple test on the Mastiffs you have at home in order to rule out the possibility of a sudden blockage in one of your dogs, and to increase the database at UPenn. No vet appointment or high fees involved. The test costs less than one bag of dog food or one show entry and can be done by yourself.

Together, we will beat this thing.

Please direct any general questions you might have about the research being done to any of the cystinuria subcommittee members rather than calling UPenn directly. The time the scientists spend answering basic questions takes away from their research and slows progress for all of us.

To have your mastiff tested for Cystinuria:

Print out this linked form to submit liquid urine in a tube (an interactive .pdf). Important: feed your Mastiff 2 to 4 hours prior to collection of urine. Collect at least 3 to 5 milliliter (3-5 cc) urine in a very clean container, for instance, a sterile glass or plastic tube with appropriate lids from your local veterinarian. You may wish to store the liquid urine samples in the freezer until you have collected all samples for shipment.

Ship by overnight mail in appropriate mailer, with an ice pack. Include a completed submission form (an interactive .pdf) and check payable to Trustees, Univ. of Penn. for $40 per dog.  Please call UPenn directly (215) 898-3375 for a Kennel Rate Discount when multiple dogs will be collected and submitted together and the results will be reported to one individual.

Mail to:

University of Pennsylvania
School of Veterinary Medicine
The Josephine Deubler Genetic Disease Testing Lab
3850 Spruce Street, Room 4006
Philadelphia, PA 19104-6010
PH: (215) 898-3375 Fax: (215) 573-2162
Website
Email

The results will be sent to you within 10 days of reciept of the samples. ALL identifying information is kept STRICTLY CONFIDENTIAL and is seen only by members of the research team at University of Pennsylvania. If your dog has tested positive for the nitroprusside urine screening test, and you need to submit blood samples, please use the consent form  

Please read the following pages for more information:

 
MCOA Health Committee:
Co-Chairs:
Anna May (951) 704-6022 mastiff@iinet.com  
Jenny Zinn-Boyce (562) 425-8354 jzinnboyce@aol.com    

Members:

Jan McNamee (330) 648-9427 windfallmastiffs@hughes.net 
Dr. Bill Newman (814) 623-9377 dansdad@pennswoods.net  

Subcommittee chairs:

Cancer - Jenny Zinn-Boyce (562) 425-8354 jzinnboyce@aol.com
Cystinuria - Anna May (951) 704-6022 mastiff@iinet.com
DNA - Mary DeLisa (303) 929-5529 mwhipple75@aol.com
Health Awards - Karen Flocker (480) 632-5240 mastiffmom@cox.net
Hip - Elbow Dysplasia  Tammy Sholes (828) 428-3355 nicochri@bellsouth.net
PRA - Carla Sanchez (951) 696-4169 CARLACHEZ@aol.com
Seizure Disorders - Doreen Dysert (503) 348-9347 ddysert@hughes.net

Established in 1997 by Constance Parker.

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cariston

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Reply with quote  #8 
How is the testing different from Newfies to Mastiffs??


Ive heard the C+ testing for newfies is much more effective in newfies than for mastiffs. Reason being that the C test thats available for mastiffs can only test if the dogs carry the C in the urine, but newfies that get C test tests for much more, maybe also they have a genetic marker linked???  Not sure the entirety but please do not take my info as factual. Thats just what Ive heard from newfie and mastiff breeders. My question is how is the test for newfies more advanced then the testing for mastiffs???  Any info would be greatly appreciates.



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Reply with quote  #9 

I think establishing a database IS a great idea. 

However, I think it would need to be done WITH proof of some sort, and how can we be assured that the proof would be accurate and not just a doctored form?  From my understanding PDF's are editable these days and someone previously pointed out the paper forms are likewise able to be altered when scanned? 

I HATE to think anyone would even consider this, but with this being the "big deal" all of a sudden, you never know?

As far as the PRA database is concerned, I do recollect that you could forward the email from Optigen to Deb Jones, acting on behalf of the MCOA - (now I believe Karen Flocker is in charge?) but then Optigen also sent a (quarterly?) verification report to the MCOA. 

If UPENN was willing to work with someone on the Cystinuria committe - perhaps verification reports could be sent directly from UPENN to the MCOA to establish a database like there is for PRA? 

OR, people could just submit the information to the OFA and have it added to that database which is already established.  The disadvantage to that, as previously mentioned, is that only themost recent test would appear, unlike CERF, which gives years for all times test was performed.  Perhaps if someone spoke with the folks at OFA this could be changed?

Heather




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EXCMastiffs

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Reply with quote  #10 
Quote:

Ive heard the C+ testing for newfies is much more effective in newfies than for mastiffs. Reason being that the C test thats available for mastiffs can only test if the dogs carry the C in the urine, but newfies that get C test tests for much more, maybe also they have a genetic marker linked???  Not sure the entirety but please do not take my info as factual. Thats just what Ive heard from newfie and mastiff breeders. My question is how is the test for newfies more advanced then the testing for mastiffs???  Any info would be greatly appreciates.


They discovered the mode of inheritance for the Newfs, so testing and information is on a different scale.  It is NOT the same mode of inheritance in the Mastiff, however, so it really does not help us.

Heather


 

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Reply with quote  #11 
I mean, Jann COULD set up an informational database, requiring scanned proof or PDF's, and just put a disclaimer that the information IS supplied by owners and subject to verification?

Heather

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sandragon

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Reply with quote  #12 

you can sent OFA 15.00 and they will post your results! UPENN should have a data base. because if Jan or anyone does this you wont get a real picture. you have to many people who's dogs have tested positive then they changed the food and then tested negative.. sorry that dog is still positive but the only thing you or I will ever see is the negative. so its a wast of time. Upenn need to do this and they need to list dogs that came back positive and then retested negative. Linda has pedigree up on her board. you can go look and try to judge for you self where it is and how to stay away from it. at this point until further proof from Upenn its still sex linked. I dont take what someone says that Dr so and so said this or that. Because you dont really know if thats truly what they said.


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OsoBodacious

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Reply with quote  #13 
I think this is a great idea.  It would be better if MCOA, directly through UPenn, could maintain an "official" database, but even if all we had was a database here on this board, it would be helpful.

I agree that some kind of substantiation needs to be required.  Lets face it - anybody could say their dog tested negative and later "lose" the paperwork.  Even scanned copies of the UPenn report are better than nothing.

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sandragon

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Reply with quote  #14 

One thing I do think would help is if UPENN we make a note or place on their sheet stating the dog tested positive previously. that way people can hide the fact there dog tested positive at one time!


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Reply with quote  #15 
Warning to anyone reading this. I am SICK TO DEATH of playing the "be nice game" on this issue so be prepared!!

Glad to see the idea has been brought up, but I have to agree that too many people have figured out a way to cheat the only test we have for  C+. Yes, you DO know who you are and, imho, you are scum MCOA MEMBER OR NOT!!! Anyway, I do believe that those of us who TRULY want to know the truth about our dogs can actually use the current test's flaws to find out more definitively if we so choose to (if they are old enough).
I wanted to know beyond ANY DOUBT with my boy so here are the steps I took:
1.) Feed a super high protein diet for several days.
2.) Feed all the raw chicken he wanted.
3.) Cut back on his water (not to the point of dehydration of course).
4.) Add  garlic salt to the chicken to make it extra yummy.
THEN DO THE DAMNED TEST AND SEND IT IN!!!!

A cystinuria dog SHOULD TEST POSITIVE under all of these conditions (Giger agreed with me on this one) if he were prone to cystinuria. My boy came back negative again (first test at around 18 months if I remember correctly and this last one was at 3.5 years old). Was I scared to death waiting on the result? YOU BETCHA!!!!!!!!

I wanted to know because I do plan on using him as a stud dog. As far as I'm concerned, I'd rather know the truth rather than "adversely rigging" the test for a stud fee. There's not a stud dog fee on the face of the planet that's enough to try to "fudge" the test to force a negative!! 

And for all those out there that really are swallowing the baloney that there's "no test", the truth is that you are just trying to play the pied piper and get everyone on your bandwagon so that you can keep using your C+ boys. Unfortunately, we don't know about the girls yet, but stopping the breeding of C+ boys IS doable right NOW and IS a place to start!!





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Kelly

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Reply with quote  #16 
Hey Teresa don't hold back now, tell us how you really feel!

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Teresa

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Reply with quote  #17 

Oh darn, was I a bit too subtle again?


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Kelly

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Reply with quote  #18 
Um, well, something like that 

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Reply with quote  #19 

Ummm, Kelly, did you ask Buck if you could use his picture? hehehehe....


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