1. What is an Open Registry?
For our purposes, an open health registry is defined as a listing of dogs affected by a hereditary disease. This list is open for viewing by OESCA members. Cerebellar Abiotrophy, also known as cerebellar ataxia (CA), is the FIRST disease that will be in the multi-disease OESCA Open Health Registry.
2. What information will be available in the OESCA Open Health Registry?
The OESCA Open Health Registry will contain educational articles about the disease that must be read before you have access to the list of affected dogs. The list will contain the dog's name, registration number, birthdate, sex, sire and dam. There will be hyperlinks under the name column to access the OESCA Pedigree Search and the dog's pedigree.
3. Who manages and maintains the OESCA Open Health Registry?
The Registry Manager is Chris Lawrenz who receives all information from Karen Lee, the Pedigree Manager. Karen receives a dog's name and CA status from Dr. Jerold Bell, the CA Diagnostic Expert. Dr. Bell is the sole authority responsible for establishing the status of CA affected dogs in the registry. All information is sent electronically to avoid errors from retyping information.
4. What are the steps to list an affected dog in the CA registry?
If owners and/or breeders suspect their dog has CA, they need to contact Dr. Bell. He will request the following: a video of the dog, medical records, a pedigree, or a necropsy report if euthanized. After reviewing all materials with Dr. DeLahunte, Dr. Bell will determine if a dog is affected with CA. If he confirms that the dog is affected, he will encourage the owners and/or breeders to sign a release form granting permission to enter the dog's name in the OESCA Open Health Registry.
After Dr. Bell receives the signed release from the owners and/or breeders, he will electronically send the dog's name, registration information and pedigree to Karen Lee, the Pedigree Manager. Karen will input the data into the OESCA pedigree database and mark the dog with an "A" for affected, the parents with a "C" for carrier, and the siblings of the affected dog with "SA".
This information is then sent electronically to Chris Lawrenz, the Registry Manager, who will post it on the OESCA Health Website in the OESCA Open Health Registry.
5. What should I do if I find a mistake in the online pedigree database?
If you should find an error in a dog's pedigree, please contact Chris Lawrenz or Karen Lee. Even though all pedigrees have been verified with the AKC Stud Books, it is possible that inaccuracies exist. When notified of a mistake, the pedigree will be researched and appropriate corrections will be made.
6. How will the information from Dr. Bell's current, closed CA Registry be released for inclusion in the new OESCA Open Health Registry?
Dr. Bell will send out release forms to owners and/or breeders who have dogs in his current, closed CA registry requesting permission to list the dog in the new Open Registry. No dog's name will be released to the Open Registry without written consent from the owner and/or breeder.
7. Will Dr. Natasha Olby's information be released to the OESCA Open Health Registry?
Information from Dr. Olby, North Carolina State University, Lead CA Grant Researcher, will not be released to the OESCA Open Health Registry. Dr. Olby's diagnosis and research data on an individual dog is strictly confidential and cannot be made available to the OESCA Open Health Registry diagnostic team unless a signed release from the owners and/or breeders of the dog grant NCSU permission to provide that information. If an owner or breeder requests that Dr. Olby send a dog's information to Dr. Bell, the owner and/or breeder must give written consent.
8. If an owner/breeder wishes to provide information to Drs. Olby and/or Bell, but does not wish to be included in the OESCA Open Health Registry is that option available?
Yes, that option is available. It is not mandatory that your dog be included in the Open Registry. You will still be able to contribute information for research to Dr. Olby and/or Dr. Bell even if you do not want your dog's name listed in the Open Registry. No affected dog's name will be released to any OESCA member or to the Open Registry without written consent from the owners and/or breeders.
9. What is the difference between the OESCA Open Health Registry and the CHIC Registry (AKC-Canine Health Information Center)?
They are two separate registries available to serve OESCA members. The difference is that a disease cannot be in the CHIC registry unless a test is available to determine the existence of the disease or the condition. OESCA currently has five CHIC registries available to members for sharing their dogs' health information. They are hip dysplasia, eye clearances, autoimmune thyroiditis, congenital deafness and congenital cardiac disease.
When a test is available for CA, cerebellar abiotrophy will be moved from the OESCA Open Health Registry to the CHIC registry as a breed requirement.
However, since the OESCA Open Health Registry is a multi-disease registry, it will continue to serve additional, hereditary diseases for which there is no diagnostic test available. The new, multi-disease registry has been designed to provide information on hereditary health issues our breed faces both today and tomorrow.
10. When will the OESCA Open Health Registry be available for membership use?
Our goal for membership access to the Open Registry is December 31, 2007.