Announcement:
2009 Health Survey for Old English Sheepdogs Results (.pdf format)
October 20, 2009

Health and Research Committee Update:
2009 OESCA HRC Annual Report (.pdf format - 2MB - large file)
October 18, 2009

Health and Research Committee Meeting Summary:
Subcommittees List, 2009 HRC Goals
February 28, 2009

The first meeting of the OESCA Health and Research Committee for the 2008-2009 year was largely an organizational meeting to plan and schedule the year's work. Meeting notes provide a list of Committee Members, the list of HRC Subcommittees and the members on each, and the Goals for the 2008-2009 year.

OESCA HEALTH AND RESEARCH COMMITTEE MEMBERS 
Ann Lapp (C), Madeline Erickson, Christina Gaburri, Christine Lawrenz, Cass Moulton-Arble, Liz Muthard, Marilyn O'Cuilinn, Linda Ruelle, Dea Freihert, Amy Spaeth DVM, Michelle Redfern DVM.

HEALTH AND RESEARCH COMMITTEE: 2008-2009 SUBCOMMITTEES

Open Registries Subcommittee:
Chris Lawrenz, Chair, Karen Lee*, Kristine Loland*, Dennis Maier*, Ann Lapp

Health Research Subcommittee:
Linda Ruelle (C), Cass Moulton-Arble, Amy Spaeth, DVM, Michelle Redfern, DVM

CHIC (AKC - Canine Health Information Center) Subcommittee
Liaison: Chris Gaburri

Health Website:
Amy Spaeth, DVM

Health Fundraising Subcommittee:
Marilyn O'Cuilinn (C), Liz Muthard, Anna Jacobson*, Karen Burdash*

Health Survey Subcommittee:
Madeline Erickson (C), Chris Gaburri, Amy Spaeth, DVM, Dea Freiheit

Grant Writing and Reports:
Ann Lapp, Amanda Ruelle*

(C) - Chair of Subcommittee
*  OESCA volunteers who serve on HRC Subcommittees but are not members of the Health and Research Committee. 

OESCA HEALTH AND RESEARCH COMMITTEE 2008-2009 GOALS

Complete World-Wide breed health survey and distribute a final health survey report

Select, recommend and monitor new and potential OESCA health research projects and grants

Continue to monitor and support existing OESCA research projects and grants, currently Cerebellar Ataxia, PRA - progressive retinal atrophy, and hip dysplasia 

Continue to participate in AKC CHIC DNA Repository collections

Continue to develop, maintain and support open registries, including cerebellar ataxia, cancer, eye clearance, autoimmune thyroidism, hip dysplasia, congenital cardiac disease and congenital deafness.

Inform and educate members on breed health issues, including sponsoring health seminars, maintaining and expanding a health website, submitting health information and articles to the OETimes and assisting members in need of health referrals.

Build a climate that encourages an awareness and open sharing of breed health issues and concerns 

Plan and coordinate fundraising activities to support health projects and grants 

Health and Research Update
Cerebellar Ataxia Update from Dr. Natasha Olby
January 28, 2009

Progress report for OES Club of America, January 2009

The current grant we are working on was funded in April of 2008, and since that time we have done a lot of work both focusing on the region of linkage we had established in our prior work, and screening the rest of the genome more completely.

In our previous work we had identified a region on one chromosome that had significant LOD scores. In other words, this region was linked to the disease based on our linkage analysis. However, the region was large and contained literally hundreds of genes. Our work since April 2008 took up the search from this point. To see if we could narrow the region, we identified new markers within the region and genotyped them in our families of dogs. Unfortunately, this did not make the region any smaller, probably because of the relatively low number of dogs we are working with. For our next step we looked for candidate genes in the region that was linked to the disease. These are genes that are either known to cause similar diseases in other species, or to have a function that might affect neuronal survival. We sequenced four of these genes in a small group of dogs and very disappointingly, we did not find any consistent differences between the normal and affected dogs.

Our next step was to try to look at the whole genome again using SNP chips. This very new technology allows us to look at markers that are relatively closely spaced over the whole genome (just over 22,000 markers in total). We were very lucky to collaborate with a laboratory at NIH for this – their expertise, equipment and financial support made it possible. Using this data, we then performed a different type of analysis, an association study, to see if we could find a region that was associated with the disease. We did this analysis in 22 dogs and unfortunately, the association study did not provide any significant values for us either in the region we had already identified as linked, or in the rest of the genome. There are numerous possible reasons for this: first and foremost is the number of dogs we are working with. We have DNA from only 16 affected dogs and most association studies are run with at least 30 affected dogs, most use more than 100 affected individuals. There is not much we can do about this other than wait for more affected dogs to appear, and the flip side of this problem is that it does indicate that the prevalence of the disease is not extremely high within the breed, which is a good thing. Other possible reasons for failing to identify a region are that we have the incorrect phenotype (are the affected dogs really affected and are the normal dogs really normal?), incorrect dog ID or a more complex mode of inheritance than anticipated. We continue to be as careful as possible in deciding the phenotype of each dog and considering different modes of inheritance in our analyses.

What are we doing now? Rather than be disheartened, we are moving forward in a couple of ways. Firstly, we have statisticians evaluating the data in different ways to see if they can find any statistical link to the disease. This takes time – with over 22,000 data points for each animal, the data files are enormous. If they show up anything interesting we will be looking to sequence candidate genes in those regions. Secondly, we are planning to genotype another 48 dogs on the SNP chips provided we have sufficient funds. Our hope will be that including more dogs will give us the statistical power we need to identify a linked region. This all takes time, so please be patient and be assured we are working hard on the project. We are limited by the low numbers of samples we have so if you know anyone with an affected dog, please ask them to contact us (919-513-7235). If we have any good news, we will of course pass it on to the OES Club of American Health Committee. In the mean time, we will continue our work and hope that an answer will be forthcoming soon. Thank you and the AKC Canine Health Foundation for your continued support of our work.

Natasha Olby

View the March 28, 2007 HRC Update on Cerbellar Ataxia

Health and Research Committee Update
Too Many of Our Dogs Have Cancer: WHAT CAN WE DO?
October 24, 2008

Cancer is one of the leading causes of death in Old English Sheepdogs. Sadly, this fact does not surprise us since cancer is also a leading cause of death in people and many species of animals. The challenge of cancer looms large. Canine cancer is a painful and tragic disease for the dogs and for the families that cherish them.

As members of the Old English Sheepdog Club of America (OESCA) Health and Research Committee, we are determined to aggressively pursue this disease by supporting cancer research for our breed. To achieve our goals, we have collected and earmarked dollars for cancer research, and at the same time continued to gather information from OES owners and breeders to determine the frequency of cancer and the types of cancer that affect our breed. In September 2008, OESCA launched a comprehensive Health Survey to remain current on the breed's health information. Cancer is being reported as a part of that survey. We are closely monitoring the data as the surveys are being submitted and tabulated.

While advances in cancer research are rapidly expanding, a need still remains for specific, breed-related information on cancer. This is where OES owners and breeders can be of greatest help. The better informed our research decisions, the sooner we can improve the quality of life for dogs and their owners.

What can we do to help our dogs?

If you currently have a dog who has been diagnosed with cancer or if you have lost a dog who was diagnosed with cancer, we ask for your assistance. We encourage you to share your dog's health data by completing the following 3 steps:

Step One:  2008 OESCA Health Survey
Complete the 2008 OESCA Health Survey and submit your dog's health information. Go to www.oeshealth.org, click "Health Survey" and follow the easy instructions. This survey will take less than 10 minutes to complete. It is easy to follow, comprehensive and user friendly. By submitting this information, you will have provided information that will be used to make decisions for our breed's cancer research priorities and treatments.

Step Two:  VetCancer Registry
Ask your veterinarian to add your dog's data to the VetCancer Registry at www.vetcancerregistry.com . Data must be submitted by your veterinarian as diagnosed by histopathology. Even if your dog had cancer years ago, if the diagnosis was by histopathology, it is critical information we need.  As a global, cancer registry for dogs and cats, the VetCancer Registry reveals trends in animal cancer, and serves as a rich data resource for future cancer research and treatment options. With the information you and other OES owners submit, data will inform owners, breeders, breed clubs and scientists.  Click here for a sample letter to bring to your vet.

Step Three: Canine Health Foundation DNA Repository
Send a sample of your dog's blood to the Canine Health Foundation's DNA Repository. The DNA Repository collects and stores DNA samples along with the dog's pedigree and a health history to facilitate future research and testing aimed at reducing the incidences of inherited diseases in dogs. The procedure for collecting and submitting your dog's blood follows: 1) Ask your veterinarian to collect a blood sample from your dog, 2) Include a copy of your dog's pedigree and a completed health survey form and 3) Package the blood sample with cold packs, and ship with the pedigree and health history form via overnight express to the DNA Repository. You will find that many veterinarians prefer to package and ship the sample for you.  Click here for shipping instructions.

* * * * * * * * * * * *

By completing the 2008 Health Survey, asking your veterinarian to register your dog with VetCancer Registry and donating blood to the DNA Repository, you will help collect and maintain health information essential to research in cancer and other canine diseases. Most important, you will provide health information capable of preserving and protecting the health of our breed.

Thank you in advance for your support.

OESCA Health and Research Committee
October 2008

Health and Research Committee Update:
2008 OESCA National Specialty HRC Annual Report (.pdf format)
September 16, 2008

Announcement:
2008 Health Survey for Old English Sheepdogs
September 12, 2008

Dear Old English Sheepdog Owners:

Welcome to the 2008 Health Survey for Old English Sheepdogs. This confidential, on-line, health survey has been created to serve as a window into the health of our breed. In many ways this survey will also serve as a direction for our breed’s future. This comprehensive survey is open to all OES owners, worldwide, who currently own or have owned an OES(s) between the years of 1998-2008. The information collected will be used to direct funding for specific research that can improve the health issues that have been identified in this survey. Please take time to complete this important document.

To begin this survey, please go to the web site of the Old English Sheepdog Club of America Health committee, www.oeshealth.org and click on the health survey button. You may also link to the survey through the Old English Sheepdog Club of America website, www.oldenglishsheepdogclubofamerica.org  Please click on the Health and Research tab which will lead you to the 2008 Health Survey. Follow the directions given for a successful completion of this survey. If help is needed please contact any member of the Health Survey committee listed below. A paper survey is available to our OES families that do not have computer access. Please contact Madeline Erickson for a paper survey. This survey will be on-line through May 15, 2009. Results of this survey will be published once the survey is completed.

Thank you in advance for you participation. We look forward to a healthy future for our breed.
Wishing YOU and YOUR OES – GOOD HEALTH!!!

Madeline Erickson (waynenik@aol.com)
Christiana Gaburri (cgaburri@verizon.net)
Kristine Loland (kbloland@ix.netcom.com)
Amy Spaeth, DVM (jacksonpethospital@charterinternet.net)

2008 Old English Sheepdog Global Online Health Survey

The purpose of this confidential survey is to determine genetic and potentially genetic health problems in the Old English Sheepdog. Routine health issues such as parasites and infections are not included. It is suggested that you preview the survey by visiting the Old English Sheepdog Club of America health website www.oeshealth.org

Hints and Tips for completing the survey: 

This survey is for dogs you have owned in the last 10 years, 1998-2008. Make a list of those dogs, then determine their health problems, consult your veterinarian if you are unsure of their health problems. If you cannot find your dogs health problem in the list you can write in the problem in the spaces provided. Also, please report dogs that you owned in the past 10 years that had no health problems. 
You should have no problem quickly completing the survey if you have done this first. You may enter up to five dogs without starting at the beginning of this health survey. Please feel free to return to the survey to add additional dogs or to update information you previously entered on a dog. 

You will be asked to answer every question. Use the "Back" button to make corrections. All answers are confidential and anonymous. 

Thank you for your input.

Announcement:
OESCA & OESCA HRC Blood Drive for DNA
July 11, 2008

Dear Owners and Breeders of Old English Sheepdogs:

OESCA and the Health and Research Committee are launching a breed blood drive to capture the DNA of our current OES. The vast majority of our current generations of dogs have not been collected and stored. Should we fail to capture this vital DNA, our breed’s research potential will be severely disadvantaged. You need to act now to store as many samples as possible. It is also critical that samples are collected and stored from our most prolific breeding animals.

The greatest reward for participation will be the knowledge that you have contributed to a resource that will directly impact the quality of life for our dogs and the breed’s future dogs. The HRC has tried to make it as easy and cost effective as possible for you and your dogs to donate blood samples. The Canine Health Foundation has agreed to a 50% reduction in cost for OES donations to the CHIC DNA Repository from June 1 – September 20, 2008. The reduced fee for OES will be $10.00 per dog.

As members of the Old English Sheepdog Club of America we are known for stepping forward when researchers have asked for blood donations. OESCA takes pride in the fact that we contributed over 350 samples with pedigree information to Drs. Johnson and O’Brien at Missouri State for cerebellar ataxia research and over 100 donations to the Ostrander lab for hip dysplasia research. The 350 samples banked at Missouri State remain available for today’s OESCA research projects; the Ostrander Lab samples collected at the Centennial Show were specifically collected for hip dysplasia research are not available for other research. This means DNA on most of the living OES today needs to be collected and stored before we have lost the opportunity to do so. (For additional information on the DNA Repository, refer to the June OE Times, page 34 and 35.)

Steps to participate include:

(1) All dogs attending the 2008 National Specialty will have the opportunity to contribute at the DNA clinic being held during the specialty week. Three veterinarian teams will be collecting blood on Wednesday, Sept. 17, Thursday, Sept. 18 and Friday Sept. 19 from 7:00 am-9:00am in the Grooming Building. Please plan ahead by filling out the form and survey prior to the National.
      DNA Form & Survey      Blood Draw Instructions   (.doc formats)

(2) For dogs not attending the National Specialty, you can draw their blood samples and send them in with the appropriate paper work. We have found that veterinarians often will perform this service free because it is for research. In fact, some vets will come to your kennel and draw blood on all of your dogs.

(3) Additionally, some of the OESCA Regional Clubs, like the Greater Pittsburgh OESC, are organizing collection clinics after a show with the club paying for the fees involved and handling the shipping.

(4) With each dog’s sample, you will need to complete the attached forms, including a 3-5 generation pedigree and a brief health survey. Your reduced fee is $10.00 per dog. Send the paper work, payment and blood sample(s) overnight, using cool packs, to OFA . Your vet may do this for you. (Further instructions are on the attached forms.)

SPECIAL APPEAL TO OWNERS AND BREEDERS OF PROLIFIC DOGS

Prolific dogs have the greatest impact on any breed. It is critical that we have stored DNA from the breed’s most used studs and bitches. We will appreciate your full cooperation and urge you to collect and store DNA from these animals as soon as possible.

On behalf of the Breed, OESCA and the OESCA Health and Research Committee, thank you for participating in the CHIC DNA Repository. If you have any questions, please contact:

Linda Ruelle 703-902-5549 Ruelle_linda@bah.com 
Chris Gaburri 412-761-0493 cgaburri@verizon.net 
Ann Lapp 715-878-4861 pettiboneoes@aol.com

Collecting and banking DNA is likely the single most important act you can contribute to advance our breed’s health. As stated on the CHIC website, “Blood is the gold standard for genetic material; your dog’s DNA is sufficient for all research methods, including technology in the future. Moreover, the stability and purity of DNA is of the highest caliber, which offers the most benefits.” 
Your dog’s DNA can help reduce incidence of inherited disease in Old English Sheepdogs. This is very exciting. In fact, we feel strongly that with your help we can bank 300 DNA samples from Old English Sheepdogs by September 20, 2008.

We have every confidence that this breed cares deeply about our dogs’ health. Let’s show it. Do whatever you can do to help. Feel free to duplicate this letter and encourage all OES owners and breeders to participate. Help others understand the importance of blood donations; help them get their dogs to the vet, provide copies of the forms, answer their questions. We are doing this for our dogs.

Thank you for any and all the support you can provide.

Barbara Lamb, OESCA President

Ann Lapp, OESCA Health and Research Committee Chair

 OESCA Open Health Registry:

Message from Dr. Jerold S Bell - CA Clinical Diagnosis vs Necropsy
May 21, 2008

I have been asked about the advisability of differentiating clinically diagnosed versus necropsy diagnosed Old English Sheepdogs with CA on the OESCA Open CA Registry.  It has been my recommendation to parent clubs not to differentiate between objectively diagnosed dogs in open registries.  In the past, this recommendation has been accepted by many parent clubs in their open registries, including the Scottish Terrier Club of America, Gordon Setter Club of America, and Ibizan Hound Club of the US.

As clinicians, Dr. de Lahunta, and I are confident of the clinical diagnostic protocol.  There has never been a case of a dog labeled BY US with cerebellar abiotrophy that has not been confirmed with a pathological diagnosis when the dog has gone to necropsy.  This includes Old English Sheepdogs, Gordon Setters, and Scottish Terriers diagnosed with CA.  Dr. Olby has also reviewed the submitted videos of clinically diagnosed CA dogs, and concurs with their diagnoses.  We stand on the validity of the clinical diagnoses, and welcome the efforts of anyone who questions a diagnosis with further diagnostic testing (MRI, etc.).

There are other Old English Sheepdogs that are claimed to have CA.  However, we are not willing to make a clinical diagnosis and add them to the list without their fulfilling the clinical diagnostic protocol.  As always, I am available to those owners and breeders to establish a valid clinical diagnosis for their dogs.

What is the purpose of differentiating between dogs with clinical diagnoses and pathological diagnoses?  This plays into the hands of the naysayers that some dogs are called affected, but are not really affected.  Breeders need to deal with the reality of the dogs that have been determined to be affected with CA.  It is not fair to an owner or a breeder to be pressured to put their beloved family member down to gain a pathological diagnosis for the purpose of the registry, when the track record of the validity of the clinical diagnosis is sound.

Again, I am available to anyone to consult on possible cases of cerebellar abiotrophy in dogs that they own or have bred.

Sincerely,
Jerold S Bell, DVM
Clinical Associate Professor of Genetics
Department of Clinical Sciences
Tufts Cummings School of Veterinary Medicine

jerold.bell@tufts.edu 
phone (860) 749-8348   fax (860) 749-4760

Health and Research Committee Meeting Notes:
OES Charitable Trust, Fund Appropriations, Specialty 2008
January 28, 2008

Chair's Update:
The Trust/Foundation motion passed at the HRC meeting on October 25, 2008, and forwarded to the OESCA Board has not been acted upon at this time.
Motion: The OESCA Health and Research Committee requests that the OESCA Board authorize funds to engage Ed Sledzik to establish the OES Charitable Trust as described in the Declaration of Trust.

Congratulations were extended to Chris Lawrenz and all members who assisted her in the successful launching of the OESCA Health Registry on December 30, 2007. We are delighted to see that members are using the registry as well as adding new dogs and pedigrees to the database. Dr. Bell reports additional CA dogs will be added in the near future.

Funds in the amount of $16,200 from the OES Advisory Fund of the Canine Health Foundation account were approved for release to support Dr. Olby's one year CA Grant. Reminder that OESCA's donation is matched dollar for dollar ($26,200) by the CHF. In addition the American Staffordshire Terrier Club supported the grant in the same amount with the same matching amount from the CHF.

Subcommittee Updates:
Open Registry
Health Research
CHIC Liaison
Health Survey
Health Foundation and Fundraising
Grants

Old Business:
National Specialty 2008: Health Seminar: It was decided to invite Erika Werne from the Canine Health Foundation to speak at the Health Seminar scheduled for Tuesday, September 16. 
Health Clinic: A health clinic will be provided during the National Specialty Week to do blood collections for the Canine Health Foundation's DNA Repository.

New Business:
Motion: Chris Lawrenz moved that the HRC recommend to the OESCA Board that a donation in the amount of $250 from the OESCA general fund be made to the Scottish Terrier Club of America's health fund in appreciation for their support and assistance in the development of the OESCA Health Registry.  Seconded: Linda Ruelle. Unanimously approved.

Health Articles: Articles and information materials are continually being submitted for the OET, H&R website and the Open Health Registry on new research and health concerns. The next article in the OET will cover the latest recommendation for canine vaccinations.

No date set for the next HRC meeting.

Announcement:
OESCA Health Registry
January 1, 2008

Visit the new OESCA Open Health Registry at www.oescahealthregistry.org for more information regarding Cerebellar Abiotrophy (CA) and more to come...

Health and Research Committee Meeting Notes:
Establishment of OES Charitable Trust
November 21, 2007

The focus of the meeting was to consider a draft from the Foundation Subcommittee to establish a charitable trust for Old English Sheepdogs. 

After careful review and discussion of two documents, the "Declaration of Trust" and a "Question and Answer Draft", the motion was made and seconded that: 

"The Health and Research Committee requests that the OESCA Board authorize funds from the HRC account to engage Ed Sledzik to establish the Old English Sheepdog Charitable Trust as described in the Declaration of Trust."

Motion Passed.

No other business was conducted at this meeting.

Health and Research Committee Meeting Summary:
Subcommittees List, 2008 HRC Goals
October 25, 2007

The first meeting of the OESCA Health and Research Committee for the 2007-2008 year was largely an organizational meeting to plan and schedule the year's work. Meeting notes provide a list of Committee Members, the list of HRC Subcommittees and the members on each, and the Goals for the 2007-2008 year.

OESCA HEALTH AND RESEARCH COMMITTEE MEMBERS 
Ann Lapp (C), Karen Burdash, Madeline Erickson, Christina Gaburri, Joy Kelley Sheffield, Christine Lawrenz, Cass Moulton-Arble, Liz Muthard, Marilyn O'Cuilinn, Linda Ruelle, and Amy Spaeth DVM.

HEALTH AND RESEARCH COMMITTEE - 2007-2008 SUBCOMMITTEES

Open Registries Subcommittee:
Chris Lawrenz (C), Ann Lapp, Dennis Maier*, Karen Lee*

Health Research Subcommittee:
Amy Spaeth, DVM (C), Joy Kelley, Linda Ruelle, Cass Moulton-Arble

CHIC (AKC - Canine Health Information Center) Subcommittee
Liaison: Chris Gaburri

Health Survey Subcommittee:
Madeline Erickson (C), Chris Gaburri, Amy Spaeth, DVM, Kristine Loland*

OESCA Health Foundation Subcommittee:
Marilyn O'Cuilinn (C), Karen Burdash, Carol Rodgers*

Health Fundraising Subcommittee:
Marilyn O"Cuilinn (C), Karen Burdash, Liz Muthard, Anna Jacobson*, Danna Bankovskis*

Health Website:
Amy Spaeth, DVM

Grant Writing and Reports:
Ann Lapp

(C) - Chair of Subcommittee
*  OESCA volunteers who serve on HRC Subcommittees but are not members of the Health and Research Committee. 

OESCA HEALTH AND RESEARCH COMMITTEE 2007-2008 GOALS

Establish OESCA Open Health Registry available for membership access by December 31, 2007. The first two diseases in the Open Registry will be Cerebellar Abiotrophy (Cerebellar Ataxia) and Cancer.

Establish an OESCA Health Foundation .

Complete Breed-wide Health Survey.

Participate in projects and grants focusing on OES autoimmune and cancer diseases.

Participate in the Canine Genome Sequencing Project at the Broad Institute at MIT by providing DNA from OES with hemangiosarcoma, osteosarcoma, melanome, lymphoma, mast cell tumors and mammary tumors.

Participate in the AKC/CHIC DNA Repository by contributing OES cheek swabs and blood samples.

Continue to monitor and provide DNA and sample support for current OESCA supported research projects in cerebellar abiotrophy, hip dysplasia and progressive retinal atrophy (PRA).

Inform members on breed health issues, sponsor health seminars and assist members with health information and referrals.

Build a climate that encourages an open sharing of health issues and concerns.

OESCA Open Health Registry:
Answers to Frequently Asked Questions Regarding the CA Registry
August 19, 2007

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.

CA Research Update from Dr. Natasha Olby
March 28, 2007

I promised OESCA an update by the end of March. I am pleased to be able to give you good news.

We have found significant linkage on one of the chromosomes we have genotyped. The LOD scores are greater than 4, and so we are in an excellent position to look at candidate genes in that area. If there are none, we will do a high density screen of the area. Basically both of the these items are in the preproposal we submitted to continue this work with the AKC Canine Health Foundation (The proposal is a one-year continuation grant focusing on the OES and Scottish Terrier breeds.) 
I am delighted with what we have so far. We are continuing to work on the project at full speed.

Natasha Olby, PhD
Diplomate ACVIM (Neurology) - Associate Professor of Neurology
College of Veterinary Medicine - North Carolina State University
Click here for the CA Study Web Page

Health and Research Committee Update
Open Registries
March 1, 2007

The Health and Research Committee (HRC) believes strongly in the benefits of open health registries and has consistently called for their development. Two types of health registries have been developed. First, we have developed and established registries for diseases which have tests available for diagnosis. These registries are housed in the Canine Health Information Center (CHIC). Currently OESCA has identified five diseases for the OES breed registry: hip dysplasia; eye clearances; autoimmune thyroiditis; congenital deafness and congenital cardiac disease. Secondly, we are developing an OESCA Open Health Registry for multiple diseases which have no available genetic tests. The first two diseases to be entered into the multiple registry are Cerebellar Abiotrophy and Cancer.

The HRC continues to work on the multiple disease OESCA Open Health Registry with Dr. Jerold Bell serving as the genetic consultant and lead diagnostician for the cerebellar abiotrophy registry; Dr. Steven Steinberg as our advisor for the cancer registry. The target startup date for an OESCA Open Health Registry is December 2007.

This comprehensive, multiple-disease registry has the potential to assure improvement in numerous genetic diseases affecting Old English Sheepdogs. In addition to the advantage that it focuses on more than one disease, the open registry would serve a broader range of OES members and their dogs. Members will have the opportunity and responsibility to provide information on numerous inherited diseases that affect their dog, establishing a wealth of information for owners, breeders and scientists.

The registry will no longer be confined to serving members who have affected dogs in one area of health concern. Once a genetic test is available for a disease, the disease will be moved to the CHIC registry as a breed requirement. As an example, when the genetic test is available for CA the disease will be moved to the CHIC registry; however, the need for the OESCA Open Health Registry will remain. The Registry will continue to be the tool that collects information on other high priority, inherited diseases that face our breed, not only today but in the future.

The Development of OESCA Health Registries: A Look at Our Evolution
Strange as it seems, the quest for an open health registry resulted from the closed registry. Dr. Bell’s CA Risk Analysis database has served OESCA as the information resource for cerebellar abiotrophy for years. The time had come to address options for making the data on CA available to the membership. After the HRC studied the possibility of opening the database that had been developed as a closed database, the conclusion was that there were clear advantages to developing a new, independent database and thereby avoiding many legal and confidentiality issues, both real and feared. Consequently in June 2006, the HRC sent a letter to the membership explaining the reasoning behind their position against opening the closed Bell database and continued to work to develop new registries.

At the 2006 OESCA Annual Meeting, a motion was proposed calling for the development of a new voluntary CA registry. The proposed motion read:

"Effective immediately, OESCA will establish a new voluntary open Cerebellar Abiotrophy registry. This registry will commence online. Any dogs currently in Dr. Bell’s CA Database will not be included in this online directory unless written permission is obtained by any owner, co-owners or breeders of said affected dogs. Dr. Bell will send release forms to these owners/breeders on behalf of OESCA. When the release form is received, the dog’s information will be made public immediately. The database will be maintained by Helen McDonnell who is the originator of Dr. Bell’s database."

The motion failed by a narrow margin. While individuals’ reasons for voting against the motion varied, those opposed to the motion point to three major reasons: 1) the timeline, 2) the database requirement, and 3) the limitations of a single disease registry. First, the motion called for a registry to commence immediately upon an affirmative vote. Developing an open registry requires months of work. Thoroughness and accuracy are central to the integrity of the registry. Involvement of health experts and persons experienced in the development and management of open registries, including persons from other breed clubs, is essential. The motion’s timetable was virtually impossible to meet.

Secondly, the motion identified a database to be used for the registry. This database was unknown to most members. One hallmark of registry databases is that they must be verified from the AKC studbook records. Until verification had been completed, no database could be approved. Finally, the third concern was the motion’s focus on a single disease. The HRC instead favors a multiple-disease registry which would collect information on numerous diseases for which there is no genetic test. Focusing on one disease was seen as limiting the impact of an open health registry.

In January 2007, members submitted a petition to the OESCA Board requesting a mail ballot be sent to the full voting membership to obtain their vote on establishing an open Cerebellar Abiotrophy Registry. The petition further states that the registry will be voluntary and will commence immediately once an affirmative vote is received. Any dogs currently in Dr. Bell’s CA Database will not be included in this registry unless written permission is obtained from the owners/breeders of these dogs. Dr. Bell will assist OESCA by sending release forms to the owners of affected dogs giving them the option to make their information public on the new voluntary registry. Further, the petition requests that the Board send the mail ballot within one month of receiving the petition.

It is important to emphasize that the HRC supports establishing a voluntary open CA registry. Therefore, the HRC supports this petition with one reservation. The timeline is still a problem. While “immediately” is left undefined, we must alert the membership to the fact that much work needs to be completed before the registry will be available for membership use. The HRC has set December 2007 as its target date for a working OESCA Open Health Registry, a registry that will include Cerebellar Abiotrophy and Cancer as the first two diseases.

The Health and Research Committee, February 2007:
Ann Lapp, Chair; Karen Burdash, Madeline Erickson, Chris Gaburri, Joy Kelley, Chris Lawrenz, Cass Moulton-Arble, Liz Muthard, Marilyn O’Cuilinn, Linda Ruelle and Amy Spaeth DVM

Health and Research Committee Meeting Summary
Report from the Open Health Registry Subcommittee
January 23, 2007

The HRC's division of work assignments uses subcommittees for focused work on major initiatives. Each subcommittee regularly reports to the full HRC for discussion, action and final approval before a recommendation or proposal is forwarded to the OESCA Board. (See 12/31/2006 report to Board for a list of subcommittees)  The Jan. 23, 2007 HRC meeting focused on work from the OESCA Open Health Registry subcommittee chaired by Chris Lawrenz with Cass Moulton-Arble, Linda Ruelle and Ann Lapp.

The subcommittee presented a draft plan for an OESCA Open Health Registry to the HRC for information and discussion.  The plan was positively received and reviewed.  While significant work has been done, the complexity of the issues and procedures requires additional work before the plan is ready for committee approval. Presentation of the draft plan was for information, discussion and feedback.  No action was requested or moved.

The draft plan submitted by the subcommittee follows:

The Old English Sheepdog Club of America Health and Research Committee has outlined a plan to establish a new Open Health Registry. An Open Registry is defined as an open voluntary database that would include the names of all Old English Sheepdogs diagnosed now or in the future by designated specialists in the appropriate medical fields. The OESCA Open Registry is a registry for multiple diseases that occur in OES and for which there is currently no genetic test available.  While Cerebellar Abiotrophy will be the first disease entered into the registry, others will follow. There are presently several registries in place that we utilize through the CHIC registry and which we do not wish to duplicate:

• OFA for hips

• OFA for thyroid

• OFA for heart

• CERF for eyes

• BAER test for hearing 

Our goal in designing THIS new registry is to help and encourage OESCA members to share health information and make wise choices. We strive to use the advice of the top experts and scientists in the pertinent fields. We are trying to identify and utilize the best people in the country to help us with the various parts of this project thus we are dependant on how quickly they are able to respond.   Good people are busy but we want the best. This Open Health Registry is a milestone in our breed and we must take the necessary time to ensure that it is accurate, user friendly, and has the approval of the selected authorities in the canine health field. Please note that this is our present draft and may be altered as deemed necessary.

Cerebellar Abiotrophy (CA) shall be the first disease included in the Open Health Registry. The names will be voluntarily submitted by the present owner or the breeder of the affected dog and will be housed on the OESCA H & R web site. Only one owner or one breeder of the affected dog need sign the release form. It will include either the pedigree of the affected dog or links to an on-line pedigree database. The Health and Research committee will take the necessary steps to establish a working CA database by December 31, 2007. Although December 31, 2007 is our target date, we hope to have the Open Health Registry working before that time.

Components of this plan include:

1. Placement of all necessary persons to construct and maintain the Open Health Registry, database, and website.

2. Develop (finalize) a contract with Dr. Bell to serve as the consultant for the development of the CA Registry and as the lead diagnostician for the diagnostic team. This contract is for one year with annual renewal, to begin in April 2007.

3. Dr. Bell shall be solely responsible for establishing that a dog surpasses the diagnostic criteria to be included in the CA Open Health Registry. (This statement has been modified since the original report was given, upon the advice of Dr. Bell)

4. The Health & Research Committee shall approve and develop a pedigree database to be used on the website. Possible databases include those created by McDonald, Kelley, Lee and others. (This statement has been modified since the original report was given, upon the advice of Dr. Bell)
   Note: 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 owner of the dog grants NCSU permission to provide that information.

5. To ensure that there is no breach of confidentiality, the persons who originally authorized placement of their affected dog’s information in Bell’s CA Risk Database will receive a release form from Dr. Bell. All dogs entered into the new Open Health Registry will require the signature of one owner or breeder.

6. We will seek AKC’s assistance to verify that all information in our pedigree database is correct.

7. The STCA (Scottish Terrier Club of America) CA Registry and database will serve as the model for the OESCA Open Health Registry.

8. A CA Relative Risk Analysis and Calculator database will be established in the future, using the STCA database as a model.

9. Cancer will be the second disease added to the Open Health Registry with other registries added as needed.

10. As genetic tests become available for the diseases listed in our OESCA Open Health Registry, each disease will be moved from the OESCA Open Health Registry to the CHIC Registry.

We are currently talking with or corresponding with several individuals for their help and advice. This includes:

• President SCTA

• CA counselor and CA chair for STCA

• Webmaster and one of the designers of the risk analysis service for STCA

• STCA member in charge of their pedigree database

• Dr. Bell

• AKC

Health and Research Committee Quarterly Report
December 31, 2006

This report covers the HRC’ s activities for the first three months of the 2006-2007 Club Year, October through December 2006.

The first meeting of the HRC for the 2006-2007 year welcomed one new member to the committee, Marilyn O’Cuilinn, and focused on organizing the year’s work. The following coordinating responsibilities for specific health initiatives were assigned. And are as follows:

1) CA Research and Registry: Chris Lawrenz, Cass Moulton-Arble, Ann Lapp and Linda Ruelle
2) PRA Research: Ann Lapp
3) Ostrander Hip Dysplasia Research: Amy Spaeth, DVM
4) CHIC Registry: Chris Gabburri
5) Health Survey Design and Development: Madeline Erickson
6) Foundation Development: Marilyn O’Cuilinn and Karen Burdash
7) Fundraising and Finances: Karen Burdash, Cass Moulton-Arble, and Marilyn O’Cuilinn and Liz Muthard
8) OESCA Health Web Site: Amy Spaeth, DVM
9) Research Grants and Reports: Ann Lapp

To meet these challenges, each member of the HRC volunteered to work on a number of the initiatives. The HRC also solicits and welcomes assistance from OESCA volunteers throughout the year.

Major initiatives for the past three months have been: 
1) CA support and registry
2) CHIC Registry 
3) Health Seminar and Clinic(s) for the 2007 Specialty
4) OESCA Foundation and Fundraising
5) The expansion and enhancement of the OESCA Health web site

CA Support and Registry
Dr. Olby reported to the HRC in November that cerebellar ataxia research results continue to confirm her optimism regarding locating the defective CA gene in OES. Research is ahead of schedule with positive results. Her next report to OESCA will be in March. She has directly requested additional DNA samples from specific families of dogs and reports that members are cooperating fully. Meanwhile the HRC has been designing and planning an open cerebellar ataxia registry separate from the current Bell risk analysis database. Dr. Bell met with the HRC and has agreed to serve as a consultant for the ongoing development. The HRC’s goal is to have a specific proposal to the Board within the next month. The proposal will include the identification of CA dogs in the database. In addition, HRC will identify and recommend formats and procedures for the dissemination and use of the information by breeders and owners. HRC is tapping the resources of a number of open registry models, including the Scottish Terrier Club that has a model cerebellar abiotrophy open registry currently in place.

CHIC Registry
The number of OES in the CHIC Registry increases weekly. Chris Gaburri reports that there are many OES who have the eye and hip certification for a CHIC number, but lack the thyroid results. Due to the fact that thyroid is a significant health concern and the test is costly, the HRC plans to hold a thyroid clinic in conjunction with the 2007 National Specialty to enable more OES to complete the required test for their CHIC number. This clinic will provide a convenient service for all attending the 2007 National Specialty at a substantial savings to members.

Health Seminar and Clinic National Specialty 2007
Planning is in the works for a health seminar focusing on Autoimmune Thyroiditis in the OES with a companion Thyroid Testing Clinic.

OESCA Health Foundation and Fundraising
The HRC thanks all who have contributed dollars to Health Research in the past three months. We are most grateful. Many are writing checks to “The Canine Health Foundation Old English Sheepdog Advisory Fund”. This provides a tax deduction to the donor and the check is also matched dollar for dollar by the Canine Health Foundation. We wish to share a story of the great results one check can achieve. With Elaine Saxon’s permission, we are delighted to report that she knows how to maximize her donation. Elaine wrote a substantial check to the CHF OES Advisory Fund; it was matched by her employer in her company’s charitable giving program and also matched by the Canine Health Foundation. The result is that OESCA came out the big winner and for Elaine it was a gift that kept growing. THANK YOU to the Old English Sheepdog League of Northern California for sending a sizable check for CA research. Regional club support is a big help. And finally, we THANK all the members who contributed dollars to Health and Research when they paid their dues. It is much appreciated and expands what OESCA can do for the health of our dogs.

For long range planning, Marilyn O’Cuilinn and Karen Burdash are heading a group hoping to design an OESCA annual fundraising plan, something we are lacking in our Club’s budgeting process. They are now soliciting volunteers and twisting arms to get more members involved.

OESCA Health Web Site
In October, we initiated the OESCA Health web site at http://www.oeshealth.org/ and http://www.oldenglishsheepdoghealth.org/. It has become a much used resource. Amy Spaeth continues to expand the site and adds health articles, bulletin board messages and news flashes to keep members informed of the latest health news. For example, the Health web site announced OESCA participation in the Ostrander Hip Dysplasia Research Project. The web site provides contact information for members to get involved and an overview of the research. While this information will also appear in the next issue of the OETimes, the web site is key to speedy communication easily accessible to most members.

In addition to the above, the 2006-2007 HRC calendar looks like a busy one. Areas of focus in the next few months will include the development of the Health Survey and a continuing emphasis on education through the web site, OETimes and the annual health seminar.

In closing, the HRC requests permission from the OESCA board to post this report on the OESCA Health web site for the purpose of keeping the membership informed of our work.

Respectfully submitted,

OESCA Health and Research Committee: 
Ann Lapp, Chair; Karen Burdash, Madeline Erickson, Chris Gaburri, Cass Moulton-Arble, Liz Muthard, Marilyn O’Cuilinn, Linda Ruelle and Amy Spaeth, DVM.