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The Soft Coated Wheaten Terrier Open Registry (OR) was established in 1996 by the Soft Coated Wheaten Terrier Club of America Inc. (SCWTCA) and the Soft-Coated Wheaten Terrier Association of Canada (SCWTAC) to support research at North Carolina State University (NCSU), University of Pennsylvania (Penn), and University of Guelph, Ontario, Canada (Guelph). Meryl Littman VMD ACVIM at the University of Pennsylvania maintains the Open Registry.
In 1998, SCWTCA and the Open Registry received the first Award of Recognition given by The Dog's Best Friend educational organization for "extraordinary fund raising efforts in support of research into protein wasting syndrome and a planned open registry." The $500 award was used for public education.
Purpose of the Open Registry
The purpose of the OR is to collect health information on Wheatens affected with Protein-Losing Enteropathy (PLE), Protein-Losing Nephropathy (PLN), and Renal Dysplasia (RD). Inflammatory Bowel Disease (IBD), Addison's Disease, and Renal Failure (RF) are also being tracked.
This information is vital for our research to discover the mode of inheritance of PLE/PLN, RD, IBD, RF, and Addison's. Already, it reminds owners and breeders to closely monitor close relatives of affecteds before they become ill. Potentially, this information could lead to discoveries that:
- Help breeders make informed breeding decisions by knowing if their stock includes genetic normals, affecteds or carriers.
- Give owners and veterinarians the opportunity to closely monitor genetic affecteds before they show symptoms.
- Contribute to the development of diagnostic tools at an early stage in the disease process.
- Provide more insight into associated conditions and risk factors.
- Identify plans to treat these diseases.
When the OR was in its 10th year, Dr. Littman wrote:
The breed club can feel proud that they did all they could to be honest/open with one another and share information, generations before other breed clubs did so. I think the Wheaten community of the future will benefit from the precious historical information as well as the samples saved and not just thrown away or lost. what it has done so far is already remarkable. It has certainly helped us to educate owners, breeders, and veterinarians. It has helped to stop some rumors. It has helped people realize that they were confusing several diseases together because of mimicry and common clinical signs and laboratory test results. In the beginning, only PLE/PLN and renal dysplasia were listed. Then we realized that IBD without PLE was a growing concern. And most recently we have saved the lives of many Addisonian Wheatens as we alert people that Addison's is also a problem in the breed and can be misdiagnosed as kidney failure.
We are now poised at a much more sophisticated level than we were in the past, and I think the OR has helped us come to this point. The OR helped recognize informative families, which help geneticists and other researchers currently working on these problems. The information, extent of the problem, and the cooperative zeal noted by having an Open Registry also motivates future investigators to get involved and work with these diseases and with this breed.
…(it's) interesting that we are now seeing European investigators getting involved in studying these diseases. We are now hearing about European dogs getting diagnosed with these problems. It's not just a North American problem, it is now recognized as widespread and much more work needs to be done. Technology is getting better and better to help us with our work. Our DNA bank is getting more and more samples, which hopefully will lead to statistical satisfaction.
What's on the Open Registry?
The Open Registry list contains information about the affected dog, including:
- Sex and Date of birth
- Names of sire and dam
- Age when first diagnosed
- Date of death
- Tests that led to diagnosis
Any Wheaten, regardless of its breeding, who is affected or suspected of having one of the protein-losing diseases is eligible for inclusion on the OR. Read more about submitting an Affected Wheaten to the OR.
Dogs may be listed on the Open Registry when blood, urine, and/or histopathologic test results meet certain diagnostic criteria. Criteria for listing a dog on the OR are included at the end of the Open Registry listing. Information shared is very helpful concerning diagnosis and progression of disease. Eventually, we request that tissues be saved and studied after death, including necropsy.
Membership in the OR
All Wheaten owners are encouraged to support Wheaten health research by joining the OR. Dues are $15 for a lifetime household membership; SCWTCA members' dues include OR membership. To join the Open Registry, complete and submit the Open Registry Membership Form.
- Membership in the Registry is open to anyone. All SCWTCA members are also members of the OR.
- Members have password-protected access to the OR on the SCWTCA website at (link).
- Members agree to forward pedigrees and medical data for all Soft Coated Wheaten Terriers they own, have owned or have bred who may be affected with protein-losing enteropathy (PLE), protein-losing nephropathy (PLN), juvenile renal disease (JRD)/renal dysplasia (RD), inflammatory bowel disease (IBD), renal failure (RF), and/or Addison's disease to the OR.
- Members release to the Registry the right to publish the names of any dogs they own or have owned or which have produced offspring that are confirmed to be affected with PLE, PLN, JRD/RD, IBD, RF, and/or Addison's disease.
- Members are expected to review the OR periodically for
- Accurate information about any of their dogs that have been listed. Members agree to inform the OR Chair and Dr. Littman of any errors immediately so that corrections can be made to prevent communicating erroneous information.
- Any missing dogs which they own or have bred. Members agree to contact Dr. Littman to find out if all the necessary paperwork is on file and ensure the dog appears in the next update.
- Individuals may terminate their membership at any time by writing a letter requesting such action to the Treasurer of SCWTCA, Inc. However, any dogs owned by the individual will not be removed from the OR as a result.