Newfoundland Forelimb Anomaly Study



Frequently Asked QuestionsClick each HIGHLIGHTED LINK to view answer. Note that some answers may require scrolling to the next page.What_is_the_history_of_FA ? What is the purpose and goal of this research?SAFEGUARDING YOUR DOG’S DNA SAMPLE:Can_I_send_my_samples_as_part of a shipment being gathered by someone else? My_Newfoundland_Club_is holding a DNA sample clinic. Can my dog’s blood be taken and sent then?The_OFA_has_DNA_samples_from_my_dog. Can those be used in this study?Why_is_animal_identity and sample security important? Can_I_use_my dog’s “call name”, or what “I call my dog” to identify samples?ALL PUREBRED NEWFOUNDLANDS CAN BE PART OF THE STUDY!My dog is not registered with AKC but is registered_with_another_group_such_as as CKC or UKC. Can I send his samples?My dog is a Newfoundland but we do_not_have_his_pedigree_or_registration . Ccan I send his blood sample?DOGS WITH NEWFOUNDLAND FORELIMB ANOMALYMy_dog_is_affected_by_FA. What else should I tell the researchers in Finland?Dogs with FA need to have their photographs_and_xrays_submitted. Read more here. In addition to the pedigree, I plan to send_xrays_photos_and_copies_of_vet records—what is the best way to do that?DOGS THAT DO NOT HAVE FORELIMB ANOMALYMy_dog_does_not_have_Forelimb_Anomaly Can I send his sample, and better yet, why should I? My dog does not have Forelimb Anomaly but I know, or believe, he is_related_to_one_that_has_FA. What should I do? HOW TO OBTAIN DNA SAMPLING SUPPPLIESWill_my_vet_have_specimen_mailing_boxes? Where can I get them?Who_will_supply_the_blood_tubes_and cheek swabs?Why_am_I_sending_2 cheek swabs and 2 blood tubes? GOING TO THE VET FOR DNA SAMPLINGDo_I_need_a_full_appointment_with my vet? When is the best time to make my vet appointment_and_send_my_samples using the US Post Office?When is the best time to make my vet appointment and send_my_samples_via_FedEx_UPS_or_DHL? SHIPPING INFORMATION – CHOOSING A CARRIERWhich_carrier_should_I_use? USPO – FedEX – UPS - DHLWhat_is_the_best_Post_Office_to_use? I_am_using_FedEX. Do they have special requirements?How do I make_sure_my_samples_arrived? PACKING AND SENDING SAMPLES – INFORMATION FOR COMPLETING EXPORT FORMSHow_should_I_label_blood_tubes_and documents? Ho do I fill in the USPO Form 2976B?What is an “exempt animal specimen?”What is UN3373Does my shipment contain Hazardous_Materiall?Does my shipment contain Dry_Ice or “Blue Ice”? What do I enter for value_for_my_shipment?Should I purchase_extra_insurance for my shipment?Do_I_need_any_regulatory_numbers, such as “AES/ITN/HS Tariff” or similar?Is there asize_or_weight limit? Is_there_a_difference_between “shipment weight” and “content weight”?What is a “ HYPERLINK \l "detailed_description_of_contents" detailed_description_of_contents”?IT IS IMPORTANT TO INCLUDE YOUR NEWFOUNDLAND’S DNA IN THIS STUDY. FINANCIAL HELP IS AVAILABLE.Is_there_a_way_to_be_reimbursed for the cost of the blood draw, specimen mailer and shipping costs. What do I do?WHAT IS THE HISTORY OF FA, AND THE PURPOSE AND GOAL OF THIS RESEARCH?Newfoundland Forelimb Anomaly, “FA” was recognized in our breed in the 1980’s when puppies began to be born and reach their forever homes in seemingly “normal” condition, only to show signs of “FA”, usually lameness and changes in bone structure, at 4 to 6 months of age. Veterinarians found making an “FA” diagnosis was difficult.An article was published about FA in NewfTide, the Newfoundland Club of America magazine in 1999. A brief research study had been performed. Due to lack of sufficient DNA samples and insufficient funding, the study never reached any definitive conclusions about FA. Fire, retirement, death and illness eventually impacted the early researchers. Today we are left with precious little of their original research upon which to buildEver since then, the incidence of FA in Newfoundlands has continued to increase without further scientific investigation into its cause. With no ability to “test for the mutation”, it has spread deeply into the genetics of our Breed. Today there is still no way to identify or control it. FA affected puppies can now be found worldwide.Dr. Lohi and his animal genetics team at the University of Helsinki looked at “FA” in their roles as scientists and epidemiologists They understand that we are facing a genetic epidemic or “breed emergency” in Newfoundlands. As a result they graciously agreed to use their time, expertise, and laboratory equipment to helpYour information is just that: Yours. Dr. Lohi’s team and everyone involved in this effort understands that and will honor the confidentiality of your submission.The first step will be to “read” Newfoundland DNA and compare samples from normal dogs with samples from FA dogs. This will let Dr. Lohi identify how many mutations there may be in Newfoundland DNA that cause FA.The second step will be to understand the so-called “mode of inheritance”. We will try to answer the question about exactly how the gene or genes are transmitted from one generation to the next.Once the genetics of “FA” are understood, we hope that a simple DNA test can be developed which will allow all Newfoundland breeders to select sires and dams for future generations and insure their puppies will be FA-free.The information provided by participants in the study will also be helpful in understanding if there are nutritional, exercise or environmental factors that exacerbate or bring out the symptoms of FA in young puppies.BACK TO LISTCan I send my dog’s samples as part of a shipment being gathered by someone else? It is not recommended for several reasons: (1) The blood must arrive fresh in Finland. Saving it or sending it to someone else for later shipment runs the risk of ruining the sample (2) Excess handling can fracture or destroy much DNA making a good sample hard to obtain (3) Your dog’s information is just that – yours! Sending your sample yourself guarantees that any information you provide remains confidential and is used only in a professional manner by trained researchers. (4) Using a third party to send samples breaks the SCIENTIFIC CHAIN OF CUSTODY and can place the results of all of the research at risk. Unless there is absolutely no way you can send the samples yourself, you do not want anyone involved with your dog’s samples, on their way to Finland. HOWEVER, if your country does not allow the shipping of biologics out of the country, then the only way is to deliver them in-person. In those situations, a person might be identified who is willing to take possession, store properly and transport the samples personally to Helsinki, then it is worth the risk to send your samples to them to deliver. But then it is even more critical you follow the labeling, packaging and security instructions so your DNA sample stays confidential and secure.BACK TO LISTMy Newfoundland Club is holding a DNA sample clinic. Can my dog’s blood be taken and sent then?Yes, under two conditions. (1) Your animal’s identity must be verifiable at the clinic either by scanning and reading a microchip number on-site or showing a tattoo. Either the microchip number or tattoo mark must match those on his official paper work such as an AKC Registration or lost pet-location service certificate, and (2) Your samples and documentation must be placed in a sealed tamper proof envelope. You should personally observe that it is then placed in a master container for shipment to Finland. BACK TO LISTThe OFA has DNA samples from my dog. Can those be used in this study?At this time the answer is “No”. The lab in Helsinki has stated that it prefers to use fresh DNA versus DNA stored in the OFA DNA bank. The new molecular genetics equipment “reads” complete, intact long strand canine DNA almost like a “stock ticker”. The required DNA is difficult if not impossible to recover from banked or stored samples. It is the reason we must send fresh whole blood swiftly to the lab after it has been obtained. HYPERLINK \l "_top" BACK TO LISTWhy is animal identity and sample security important?Your dog’s pedigree and DNA are his identity and serve the same purpose as your own passport or driver’s license. This research depends on precise, verifiable science if we are to expect useful findings. The research may also be summarized in a technical paper subject to peer review by other scientists. If we allow our samples to include unknown, “ringer” or “imposter” dogs, or if useful, valid DNA samples from identified dogs never reach the lab for any reason, we put the entire effort at grave risk of being inconclusive, unreliable or discredited. HYPERLINK \l "_top" BACK TO LISTCan I use my dog’s “call name” or what “I call my dog” to identify samples?No, please don’t. The name you call your dog may be unrelated to his registered name, making it very difficult for the laboratory to properly track his sample. Use their full registered name or number only. HYPERLINK \l "_top" BACK TO LISTMy dog is not registered with AKC but IS registered with another group such as CKC, UKC or other recognized Kennel Club. Can I send his samples?Yes, as long as you have a pedigree than relates your dog to the larger population of Newfoundlands, his sample is welcome. A United Kennel Club registration number might be “UKC #R200-852”. A Canadian Kennel Club Registration might be “CKC # PA934729”. Other Kennel Clubs may have a different numbering system.BACK TO LISTMy dog is a Newfoundland but we do not have his pedigree or registration, can I send his blood sample?Unfortunately, the answer is No. You may submit your dog’s DNA even if it is NOT registered, but you must still have the pedigree provided by the breeder. The laboratory and geneticists must have pedigree information in order to be able to relate your dog’s sample to the all DNA profiles collected in this study. HYPERLINK \l "_top" BACK TO LISTMy dog is affected by FA. What else should I tell the researchers in Finland?Everything and anything! Feel free to write out your dog’s history with FA in as much detail as possible. Include how he was diagnosed, at what age, and what decisions you made regarding his care. If you have had success with any therapy such as pain medicines, acupuncture, nutrition management; antibiotics, supplements or swimming, be sure to include that in your written history. Feel free to include copies of their medical records. All information about any affected dogs is important to the researchers, however long it may seem. HYPERLINK \l "_top" BACK TO LISTDogs with FA need to have their photographs and x-rays submitted. Read more below. MILD AND SEVERELY AFFECTED DOGS. If your dog has been diagnosed with some or all of the symptoms of FA, then yes, photos (front, back, left and right sides) showing your dog’s signs are very much needed as are his x-rays. Do not send photos or x-rays for dogs without FA.BACK TO LISTIn addition to the pedigree, I plan to send x-rays, photos and copies of vet records—what is the best way to do that?You do not need send anything else to the Study if your dog is not affected other than your dog’s pedigree. You can make a paper copy of the pedigree and fold it and include it in the package with the specimen mailer.. The Newfoundland Forelimb Anomaly Kits will not accommodate a CD in a USPS or FedEX mailing envelope. If your vet has digital radiography, ask for copies of the x-rays to be given to you on an inexpensive USB “thumb or flash” drive and include it with your sample. Make sure it is identified as coming from your dog. If your vet uses “flat film” technology you can delay sending x-rays until or unless they are requested by the Laboratory. Large format x-ray films will not fit into Postal or commercial carrier packaging. If you need to send the x-rays or other documents separately from the specimen, please note that the specimen has been submitted already and be sure to label them the to match the way you labeled your specimen.Be sure you clearly mark the dog’s identification physically on the thumb drive and on all saved files. You can use your dog’s [registered name and your last name] such as “Kennelname’s Plover at Snowmass/Johnson” OR use your [dog’s registration number] such as AKC# WP12345602. Just make sure your labeling is the same on all samples and all documents. It is a good idea to write that same identifier on every piece of paper you send, on a thumb/flash drive if sending digital photos or x-rays; on all hard copy photos. You can not “over label” your submission! HYPERLINK \l "_top" BACK TO LISTMy dog does not have Forelimb Anomaly. Can I send their sample, and better yet, why should I?The laboratory is building a large genetic profile of the entire Newfoundland breed. All purebred Newfoundland dogs are encouraged to participate. Since the lab is interested in any dogs in breed lines and extended family of affected dogs they would like to have samples to test for potential carriers. Given that FA is showing up around the globe, the more DNA samples the better. However, the samples must be accompanied by their pedigree information. BACK TO LISTMy dog does not have Forelimb Anomaly but I know, or believe, he is related to one that has FA? What should I do? Send your dog’s sample and pedigree to the Study and include as much information as you can, even if anecdotal, about the related dog that has or was affected by FA. The researchers will follow-up from there. If you know the FA dog’s owner, please encourage them participate. HYPERLINK \l "_top" BACK TO LISTWill my vet have the specimen mailing boxes? Where can I get them?Probably not. A special Newfoundland Forelimb Anomaly Kit has been prepared for sending samples. They can be ordered from . We have arranged a special discount price of $16.45 each which includes delivery by priority mail. You can order it from a drop down menu and receive discounts if sampling more than 1 dog. Orders placed by noon are sent out the same day Be sure to save the receipt if you will be seeking reimbursement from Sula The Newfie.You can also request kits by email by writing to: sulathenewfie@BACK TO LISTWho will supply the blood tubes and cheek swabs?Tubes and cheek swabs are included with the Forelimb Anomaly Kits available from or by writing to sulathenewfie@. Although the lab only wants 1 tube of blood, sending a second tube and cheek swabs are good insurance in case one tube leaks or the shipment is damaged in transit. BACK TO LISTWhy am I sending 2 cheek swabs and 2 blood tubes? Murphy’s Law! Sending DNA Finland requires an investment of time and money on someone’s part. The redundant blood tubes, back up with cheek swabs allow us to me as sure as we can that your dog, through his DNA, will be represented in the study regardless of what might happen to the shipment in transit. Doing it this way adds virtually nothing to the cost while protecting you from having to submit a second sample again from scratch.BACK TO LISTDo I need a full appointment with my vet? If your vet knows you and your dog well, most you will likely not need a full-blown appointment. In most practices the blood and cheek samples can be taken by a trained veterinary technician. Your vet or vet tech will need to complete and sign some of the paper work (included in this submission document). Someone in the vet’s office must verify the identity of the dog being sampled. If you are not visiting your “regular vet” make sure to bring along your dog’s identity papers such as a microchip registry certificate. BACK TO LISTWhen is the best time to make my vet appointment and send my samples using the US Post Office?After your vet takes the blood samples, place them in the Forelimb Anomaly Kit Styrofoam box along with the 2 frozen gel packs. The box, frozen gel packs and warm blood samples must be REFRIGERATED FOR AT LEAST 4 HOURS BEFORE MAILING.Packages mailed on SATURDAY will move in the Postal system to Los Angeles, Chicago or New York, clear customs and be flown to Finland on Monday. They expect such shipments to be there by or before Wednesday.FRIDAY SAMPLING: Try making a Tech Appointment with your veterinary clinic for late in the afternoon on FRIDAY. This allows your samples to be refrigerated overnight and taken to the post office on Saturday morning.SATURDAY SAMPLING: You could also draw blood FIRST THING SATURDAY MORNING, provided you can refrigerate the samples AT LEAST FOUR HOURS and still get them into a Post Office that is open late on Saturday afternoon.BACK TO LISTWhen is the best time to make my vet appointment and send my samples via FedEx, UPS or DHL? After your vet takes the blood samples, place them in the Forelimb Anomaly Kit Styrofoam box along with the 2 frozen gel packs. The box, frozen gel packs and warm blood samples must be REFRIGERATED FOR AT LEAST 4 HOURS BEFORE SHIPPING. The package must arrive in Helsinki Finland before 4 PM local time on any given FRIDAY. Samples taken on a Monday or Tuesday and sent FedEX, UPS or DHL will be there by Friday.BACK TO LISTWhich carrier should I use? USPO – FedEX – UPS - DHLWe have extensively researched all carriers. In the United States: US POST OFFICE Priority Mail Express International Service is less than half the cost of the commercial carriers and will reach Helsinki 3-4 days after mailing in the US. If you prefer to use FedEx, UPS or DHL you will have additional packaging and documentation requirements to comply with. Outside the U.S: Depending on which country and city you are mailing from, you MIGHT be able to utilize local mail, however, it is probably most advisable to use a commercial shipping company. You should do a little research to find out which service can confirm the shipment’s delivery in the desired time frame from your location and the costs associated with it. If you need or want help with that research and determining the best method, please get in touch with Sula The Newfie and we will help you do that.BACK TO LISTWhat is the best Post Office to use? It seems not all Post Offices are the same! Ask your Post Office if their International Shipments “go direct to the airport?” Do they have to be trucked some distance or to another Post Office before entering the international air shipping system? In some communities you may find that a Post Office just a few miles away has a direct-to-airport connection. Some metropolitan airports have US Post Office locations as well. If not really inconvenient, we suggest mailing from any facility with a good “air connection”. It can easily save 1 or 2 days in transit time. BACK TO LISTI am using FedEX. Do they have special requirements?Yes. While your shipment is not hazardous and not infectious, FedEx will require you to place it in their proprietary clear plastic biohazard bag. FedEx International shipping documents are checked by hand before being loaded onto airplanes. If you use FedEx and state the package contains “blood” but you do not pack your samples correctly, or fill out the paperwork correctly, you will have them returned.BACK TO LISTHow do I make sure my samples arrived? Your carrier (USPO, FedEX, UPS or DHL) will give you a tracking number which can be entered on a package tracking screen on their website. You should watch the progress of the package through their system. If your package seems to be delayed or is not showing up on the carrier’s website, call the carrier immediately by phone so they can find it and move it to its destination. You can also include a personal note inside your package asking the Lab to please email you upon receipt. HYPERLINK \l "_top" BACK TO LISTHow should I label blood tubes and documents? Trying to write on small labels attached to blood tubes is difficult. Use a fine point “Sharpie” marker. You can also use larger tape or other labels that are easier to write on. You can wrap the tape or label around the tub and affix the tape to itself to create a larger writing surface. Just make sure they are securely affixed to each blood sample and cheek swab. You can use your dog’s [registered name and your last name] such as “Kennel Name’s Plover at Snowmass/Johnson” OR use your [dog’s registration number] such as AKC# WP12345602. Just make sure your labeling is the same on all samples and all documents. It is a good idea to write that same identifier on every piece of paper you send and on a thumb/flash drive if sending digital photos or x-rays; on all hard copy photos. You can not “over label” your submission! BACK TO LISTWhat is an “exempt animal specimen?”It is very important to include the exact phrase ‘EXEMPT ANIMAL SPECIMEN’ in the documents and when asked for a description or exemption. Write his phrase in Box #3 of the US Post Office Form 2976B.What is “UN3373”?UN3373 is an airfreight designation for infectious substance transportation. DO NOT USE any box, or label with “UN3373” on it as it will cause a long customs delay and ruin your sample which is not infectious. HYPERLINK \l "_top" BACK TO LIST`Does my shipment contain “Hazardous” material?NO. Do not check any box on any form saying it is. That will delay the package HYPERLINK \l "_top" BACK TO LISTDoes my shipment contain “Dry Ice” or “Blue Ice”?NO. Do not check any box on any form saying it does. That will delay the package. HYPERLINK \l "_top" BACK TO LISTWhat do I enter for value of my shipment?While there is really no resale value for the samples, you MUST enter a value in order to clear customs out of the US and into Finland. Use $US 1.37 (equal to one Euro) per set of samples per dog. If you are shipping FedEx, UPS or DHL, your “Value for Carriage” and “Value for Customs” MUST be the same. HYPERLINK \l "_top" BACK TO LISTShould I purchase extra insurance for my shipment?All carriers will refund their charges if the shipment never arrives at all, or with UPS, FedEx, and DHL if it arrives later than promised. Ask your carrier what amount of payment they provide as basic insurance if the shipment is lost or damaged. If the carrier’s loss/damage insurance is at least equal to the cost of your vet visit and sample supplies, there is no need to purchase added coverage. BACK TO LISTDo I need any regulatory numbers such as “AES/ITN/HS Tariff” or similar?All the information needed is contained on the “Commercial Document” that is placed in the plastic pouch on the outside of your parcel. However, if asked for an “exemption” such as Box 3 on USPO Form 2976B write: “EXEMPT ANIMAL SPECIMEN”BACK TO LISTIs there a size or weight limit? For US Post, the weight is up to 4 pounds, which you will not exceed. As long as your sample box, cool pack and papers fit in the Postal Padded Mailer, it will be accepted. FedEX and UPS will have minimum charges that start at 1 pound and go up with added weight.BACK TO LISTIs there a difference between “shipment weight” and “content weight”?Yes, the carrier will indicate the total shipment weight when submitted. “Content weight” is the weight of the blood tubes and cheek swabs ONLY without packaging. You can use 8 ounces and be safe.BACK TO LISTHow do I fill in the USPO Form 2976B?What is a “detailed description of contents”?USPO Box 2: Check “other” for type of content and enter “research sample”UPSO BOX 3: It is very important to include the exact phrase “EXEMPT ANIMAL SPECIMEN” in the documents and when asked for a description or exemption. Write his phrase in Box #3 of the US Post Office Form 2976B.USPO Box 4: Use “noninfectious canine blood and swab” This is the description for the USPS Form 2976B. USPO Box 5: “Quantity as 4” unless you purchased a larger specimen mailer to send more than one dog’s specimen together. In that case, just enter the total number of vials and cheek swabs you are includingUSPO Box 6: Weight is 8 ouncesUSPO Box 7: Value is $US 1.37BACK TO LISTIs there a way to be reimbursed for the cost of the blood draw, specimen mailer and shipping costs. What do I do?Save the receipts from the blood draw, specimen mailer purchase and shipping invoice and any other associated costs and send scans of them, along with your complete name and mailing address to sulathenewfie@. Reimbursement methods will be determined once you submit them with your input as to what works best for you. Reimbursement can be through PayPal, a money order, cash, personal check or wire transfer or other method. Reimbursement applies to ANYONE who submitted blood, not just affected dogs or relatives of affected dogs. You do NOT need to identify whether your DNA specimen is for an affected dog, suspected carrier or a non-affected contributor. We intend to honor the confidentiality of your submission. HYPERLINK \l "_top" BACK TO LIST ................
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