The Institute for Genetic Disease Control in Animals (GDC): Open Disease Registry
Traits will not disappear by themselves. Nature will not save us because natural selection has nothing to do with dog breeding. Dog breeders in general need to face genetic defects as a realistic part of the problems encountered in the process of producing good sound animals. --Dr. George A. Padgett, DVM
In the past forty years veterinary medicine has advanced the frontiers of diagnosis, preventative medicine, and nutrition to a new state of the art. Now we find that many of the diseases we confront have a basis in genetics. Some are obvious and the mode of inheritance is known, such as hip dysplasia, elbow dysplasia, osteochondrosis, and Sebaceous Adenitis. Others are not so straightforward, such as diabetes, hypothyroidism, copper storage disease, and mucopolysaccharidosis. The dog-owning public and responsible breeders are now demanding registries to identify phenotypic normal and abnormal. Additionaly, they are demanding open registries that will aid in identifying genotype as well as phenotype. The GDC is the first open registry in the United States and is modeled after the open registry in Sweden which was established by the Swedish Kennel Club working with concerned veterinarians.
History of GDC
In 1981, Dr. Alida Wind, veterinary orthopedic surgeon at the University of California at Davis, noticed an unusual joint space when examining the elbow radiographs of three, six-month-old Bernese Mountain Dogs (two USA bred and one Swiss import). During her subsequent studies, it became clear that there was a need for a registry of elbows and hips for all breeds.
At the end of 1985, Dr. George Padgett, veterinary pathologist with special interest in canine genetics at Michigan State University, sent a questionnaire to the parent clubs of each of the AKC-registered breeds. He was interested in the role of breed clubs and veterinarians in evaluating the impact of genetic diseases on specific breeds. He was also interested in the formal or informal factors currently being used within breed clubs to assist members in controlling genetic diseases within their breeding stock.
He followed this with lectures to dog owners across the USA, describing the kind of data collection that would be needed in order to reduce genetic disease of any kind. He explained that a disease registry must include both evaluations of affected as well as the unaffected animals. The registry would be OPEN and AVAILABLE to persons who would want to choose breeding stock to improve the average of the breed. He also explained the data must be recorded in a manner so that it can be used to assess the relative genetic risks an individual carries by looking at sibling groups. No such registries had at that time been established in the USA and dog owners did not yet have the privilege of seeing the more rapid results when using this kind of information.
In November of 1988, a request was made to the Director of the OFA to seriously consider the formation of an elbow registry. It was requested that this registry be set up in a new way, to release both affected as well as unaffected evaluations to those who wanted to use it to select breeding stock to improve the breed average. This request was rejected with two primary reasons stated: one, that it was much too early to assume that elbow disease was hereditary, and two, that requests for elbow evaluations from OFA at that time were insufficient to make an elbow registry economically feasible.
Following this rejection, Dr. Wind sent invitations to convene the first International Elbow Working Group Meeting on April 29th and 30th, 1989 in Davis, California. This group was strongly influenced by the Scandinavians that were present, Dr. Jorunn Grondalen from Norway and Dr. Lars Audell and Lennart Swenson from Sweden. The group agreed that elbow arthosis caused by fragmented coronoid process (FCP), ununited anconeal process (UAP), osteochondritis dissicans (OCD), articular cartilage anomal, and joint incongruity, is the manifestation of an inherited faulty development (dysplasia) of the elbow joint. The group decided that international discussion should continue regarding the needs for coordinating information on canine elbow disease so that data from all countries is gathered with enough similarity so that it can be compared from one country to another.
The group also determined that an Elbow Advisory Board should be established in the USA to select or establish an appropriate registering body for elbows. This body would use the guidelines outlined in a protocol they had created which described an open database offering encouragement to register affected evaluations.
That same weekend, attendees formed the seven-member USA Elbow Advisory Board that included veterinary orthopedic surgeons, radiologists, and pathologists. During the last six months of 1989, it became clear that the OFA Director would be establishing an elbow registry with the same format that they had been using for hips. There would be no release of affected results and minimum age of evaluations would be 24 months of age. There was a need for an institute to establish open registries for hereditary diseases, not only for orthopedic problems, but also for soft tissue anomalies such as eyes. The new organization would open with a registry for elbows and with registries for three other sites in which genetic disease can be diagnosed by radiography: elbows, hips, shoulders and hocks. It would come to be known as the Institute for Genetic Disease Control in Animals (GDC).
The GDC would not enter a market of competition with OFA. Rather, it would provide a previously nonexistent choice for those owners who want to deal with this new type of registry. The closed registries such as OFA and CERF would continue to serve those owners who prefer that affected evaluations remain confidential. The policies and procedures of the GDC would also be designed to facilitate discussion of requests for registering other genetic diseases as presented by breed groups.
In July, 1990 the GDC was incorporated as a Nonprofit Public Benefit Corporation in California with a national field of operations. The founding board of directors consisted of the seven members of the Elbow Advisory Board. The board added Dr. Lars Audell, evaluator for the kennel club Registries in Sweden, and Dr. Martin Packard, who developed and manages the software for the GDC database.
Officers and members of the GDC Board continue to be active in the annual meetings of the International Elbow Working Group and have presented papers each year. The protocol established by the IEWG for elbow screening has been adopted as the international standard by the WSAVA (World Small Animal Veterinary Association) and the FCI (Fédérale Cynologique Internationale). There is a movement to seek similar agreement on an international protocol for hip and eye diseases.
Other additional active open registries have been established for Sebacious Adenitis, Medial Patellar Luxation, Craneomandibular Osteopathy, Legg-Perthes, Histiocytosis and Mastocytoma in the BMD, and Hereditary Eye Disease. Research databases have been established to collect data for diseases that are suspected to be genetic but not yet proven, including Chondordysplasia, Idiopathic Epilepsy, Portosystemic Shunt, and multiple tumors.
Open vs. Closed Registries
Radiographic Evaluation by experts determines the phenotype (the actual condition) of a dog. "Normal" does not guarantee a desirable genotype. The GDC helps to determine the ability to transmit a condition to offspring by a study of the phenotypes of relatives both normal and affected. This is what determines the genotype of the individual dog.
The OFA and CERF are confidential, closed systems of evaluating the hips, elbows or eyes of an individual without pedigree and without access to evaluations of relatives or any affected cases. Carriers cannot be identified from these registries without access to the affected evaluations and the pedigree of the animals. One may know that an individual animal is free of clinical signs of the disease, but it can not be known if its parents, siblings, or half siblings were affected. It is well known that the mating of phenotypic normal dogs may result in offspring that are normal as well as affected.
Registry with the GDC is not a quick fix. It will give phenotypic data immediately and at one year of age for most orthopedic diseases. The availability of genotypic data will depend on the degree of participation by breeders, breed clubs, and the dog-owning public. As the GDC grows, more and more information will be available on specific lines.
The purpose of the open registry is to help breeders and owners reduce the presence of genetic diseases in their breeds. In order to be effective, the registry must record data on as large a group of animals as possible, both normal and affected.
Why register every dog?
Each owner of a registrant in an open registry has agreed to the release of the data whether the evaluation of the animal is affected or normal. Each dog registered in an open registry brings crucial information to help support the improvement of the entire breed. The GDC registry delivers information to breeders for the selection of mates whose bloodlines indicate a reduced risk of producing genetic disease.
Breeders can evaluate the risk for genetic disease transmission by a dog when there is sufficient data on a family of dogs in the GDC registry. By consulting the GDC for studies of the progeny of a dog and of the siblings and half-siblings of any generation, breeders will learn the genetic disease transmission risk of a prospective sire or dam. The best breeding strategy selects low risk vs. high risk dogs.
The GDC recommends registering every dog in a litter whether or not the owner expects to breed it. If the site being evaluated is diseased, the fee for registering that site is refunded in order to encourage registry of both normal and affected dogs.
Regardless of whether or not a dog is to be used for breeding, the knowledge of the makeup of that individual is important in order to establish the genotype of any relative which is considered for breeding stock. With each affected relative found, the risk that the individual being considered for breeding will transmit this disease increases.
Using the Registry Data
In general, data in the GDC Registry is available to people who need support and information that will lead to a reduction of genetic diseases in a kennel or in a particular breed. All information must be used in accord with ethical breeding standards. All requests for information will be maintained in the file.
Many genetic diseases, such as those of the major joints listed in the GDC orthopedic registries, are believed to be polygenic. This means that more than one gene controls the inheritance of the disorder. To control the transmission of this kind of disease, one would like to breed dogs who don't have the disease (have normal phenotype) and are at low risk of transmitting the disease. A GDC certification number or an inquiry report from GDC may say that the dog is not affected. However, it could still be at high risk for transmitting the disease. To aid in determining the risk, the GDC provides progeny and sibling/half sibling reports to study when enough data has been accumulated on a family of dogs.
With multi-gene traits, veterinarians recommend mating dogs with the greatest percent of normal progeny, or, if being considered for the first time, with the most normal aunts and uncles. Various types of reports are available from the GDC that can assist breeders in making better decisions in a breeding program.
A progeny report of the dog of interest lists the names of the offspring that are registered with the GDC. It also gives the results of their evaluations and the evaluation of the other parent (if known). A sibling/half-sibling report contains the results of the evaluations of any half-brothers or sisters. For half-siblings, the evaluation of the other parent is given (if known). Studying these reports will help breeders make more informed, careful and wise decisions about a breeding program. Wise decisions in choosing what dogs to breed will reduce the incidence of genetic diseases in a kennel or the breed as a whole.
Any owner may request the GDC records on their own dog(s) at any time in order to verify the accuracy of that information.
Registries for Hereditary Orthopedic Diseases
If a dog is showing symptoms, the GDC advises that you obtain radiographic evaluation before 12 months of age.
If a dog appears normal, the GDC recommends to wait until anytime after 12 months of age. A GDC Normal Certification will then be issued if the evaluation is normal.
No fee is charged to evaluate and register a site that is affected.
$20.00 for entering a dog in the Registry and evaluation and Certification of one normal site.
$5.00 for additional normal sites whenever they are submitted
$25.00 if 2 sites are submitted (such as hips and elbows)
$30.00 if 3 sites are submitted (such as hips and elbows and shoulders)
The charge for each site that is affected will be refunded.
$50.00 Special charge package for litters.
A maximum $50.00 package can be requested by a breeder desiring radiographic evaluation of one or more anatomic sites for dogs in the same litter. The breeder will arrange for the collection of the radiographs of the members of the litter, mail them to the GDC in a single envelope, and include an application form for each dog. With this special price there are no refunds for evaluation and registering of affected sites.
For further information or registry applications contact:
Dr. George A. Padgett, DVM, one of the founders of the GDC, asks us to remember that at all times we are breeding a whole dog (10,000 genes worth!!!) including conformation, temperament, and working qualities.