Victoria Angel

FAQ

FREQUENTLY ASKED QUESTIONS

How do Doctors use cord blood in transplantation?

Q: What is an umbilical cord blood unit? And how is it used in transplants?

A: Cord blood refers to the blood left in the placenta and umbilical cord after a baby is born and the cord is cut. It is rich in stem cells that have been used to treat over 70 different diseases including leukemia and lymphomas. Cord blood stem cells are also used in clinical trials and are being investigated for treatment of Diabetes, heart disease, Parkinson’s, and Cerebral Palsy.

Q: Are umbilical cord blood cells the same as embryonic stem cells?

A: No these cells are not the same. Embryonic stem cells are extracted from human embryos. Umbilical cord blood is just the blood left in the umbilical cord and placenta after a baby is born. It is usually discarded in the medical waste.  There are no ethical, religious** or moral objections to the use of cord blood stem cells.  **Jehovah Witnesses will not use blood in medical treatment including cord blood.

Q: How is cord blood used in medical treatments?

A: Cord blood is most often used in transplant to replace defective bone marrow that has been damaged by disease, environmental factors or cancer treatment (Chemotherapy or radiation). Here is an overview of the process: Cord blood is collected at birth and sent to a specialized laboratory where the stem cells are separated from the other parts of the blood.  The stem cells are carefully frozen to -190 degrees Celsius and stored at those temperatures until needed.  When the sample is required for treatment, it is shipped to the transplant centre in the frozen state. It is thawed then transfused into the recipient’s bloodstream intravenously similar to a standard IV. The transfusion takes approximately 15 – 30 minutes. The body must then assimilate these new cells into the bone marrow so that the body can generate its own blood cells using the new bone marrow. It can take anywhere from 21 – 35 days for this engraftment to occur. During this time, the patient must be protected from all outside bacteria and viruses because the immune system is unable to fight disease.

Q: Who will use donated cord blood?

A:Researchers and medical transplant physicians to treat sick patients.

Q: How do transplant physicians use a donated sample?

A: Samples are reviewed when they arrive at the stem cell processing lab. Those that meet the criteria for medical treatment are processed and stored.  Transplant physicians can access those samples for their sick patients. The following will occur:

  • Transplant physicians will determine that their patient requires a cord blood transplant.
  • The doctor will distribute the patient’s tissue type to various registries.
  • If a public bank has a suitable sample, it will be shipped to the doctor for treatment.
  • Confirmatory testing is done on the sample to ensure that the tissue typing is consistent with the information listed on the registry before it is infused into the sick patient.
  • Sample is shipped to the transplant centre and transplant is completed.

This process can take several weeks to several months to complete.

Q: Do sick patients pay for the cord blood when they need it from a public bank?

A:  Most public banks charge $25,000 - $30,000 US per sample as a mean of recovering expenses associated with the costly program. Shipping charges are also required. In Canada, most provincial health plans pay these costs. In 2008 alone, Canada paid over $2.5 million to acquire samples from international public cord blood banks.

Options for saving umbilical cord blood

Q: Should I store my baby's cord blood in a private family bank or donate it for public use?

A: Donating cord blood for public use or storing it for your family's private use is a personal decision. Parents should inform themselves by reviewing information in the Parent’s Information Section.

Q: If I donate umbilical cord blood is it always stored?

A: We are committed to building an inventory of high-quality cord blood units to provide the best possible result for patients. Victoria Angel Registry of Hope operates within the current standards set for public cord blood banks world-wide. The following criteria are must be reviewed when determining if the sample is delegated to the research or whether it can be used for medical treatments:

  • Acceptance criteria are met
  • Collection is done by trained personnel
  • Time between collection and processing is < 40 hours
  • Medical testing results reflect no cause for medical concern
  • The overall cell count must be high – over 1 billion cells
  • No other non-conformance issues identified that preclude storage

At most public banks, the majority of donated samples do not meet these criteria and are either delegated to research projects or are discarded. This is usually due to a low cord blood volume and reduced number of stem cells in the unit. Victoria Angel has had education programs in place for many years with physicians who collect cord blood. Over time, collection techniques have improved. However, most samples still do not meet the criteria set by international organizations.  The current store rate is about 30%.

Q: What happens to my cord blood if it is acceptable for storage?

A: If the cord blood unit is deemed suitable for transplant, it will be processed in the lab to extract the stem cells from the other blood components.  The unit is assigned an unique bar-coded identifier. The donor’s name is not listed anywhere on the sample. The stem cells are then frozen and stored in a liquid nitrogen freezer.  The maternal blood and a small aliquot of cord blood are tested for viruses and bacteria. If all is fine, tissue typing is completed and the unit’s HLA type is listed in the Registry’s central data base for transplant physicians to access for patients in need.

Q: What happens to my cord blood if it is NOT accepted for storage?

A: In most cases, samples that are not stored will be dedicated to authorized research projects.

Q: If someone in my family needs cord blood, when would they use a sample stored privately in a family bank and when would they use a sample from a public bank?

A: Studies show that cord blood provides better treatment outcomes than bone marrow for many diseases.  Many transplant physicians consider cord blood stem cell transplant to be the treatment of choice for their patients.

Most transplant doctors prefer to use a suitable sample from a family member. It is easily accessible and treatment can be given quickly before the patient becomes sicker. In addition, studies show that there is less rejection, fewer complications and better survival rates when using a genetically-related sample. Doctors will look at public banks for samples when they cannot find a suitable sample within the family.
Transplant physicians will consult with patients when making their decision about treatment options. Transplant doctors will consider:

  • Type of disease – Some diseases can be treated using one’s own cells. This is called autologous transplant. Some diseases must treated using cells from another person such as a family member or an unrelated donor (allogeneic transplant). The type of the disease will dictate whether they physician can use the patient’s own cells or if a donor must be located either in the family or in donor registries.  
  • Availability of treatment cells – Blood tests/ tissue typing will show if there is a suitable bone marrow or cord blood donor in the family.  The transplant physician will need to know if a cord blood sample was stored by the family. The physician will then review all information.  If there are no suitable options within the family, donor registries must be reviewed nationally and internationally to find an appropriate bone marrow donor or cord blood sample.  
  • Number of stem cells in the available sample - Treatments have better outcomes and fewer complications if higher cell doses are used.
  • How quickly the patient needs treatment – Cord blood is frozen and ready to use. Bone marrow and peripheral blood donation takes more time to prepare the donor and extract the cells.  
  • The reliability of the cord blood bank that provides the sample - Transplant physicians and cancer treatment centres recognize the importance of accreditation with either AABB or NetCord FACT. Samples from an accredited cord blood facility meet required quality standards and are more likely to be used in medical treatment. (Victoria Angel samples are processed in an AABB- accredited laboratory). Many public and private cord blood banks are not accredited. Check this information before storing your cells.

Q: What happens in the case of a sibling or genetically-related transplant?

A: The doctor will tissue-type family members to see if family members suitably match the person who needs the transplant. Because tissue types are inherited from parents, there is a 25% chance that siblings will be an exact match to each other (as needed for bone marrow donation).  However, there is a 50% chance that there will be a suitable match when using cord blood because an exact match is not required.

  • If the relatives match: the doctor will decide between the cord blood stored in the family bank or a bone marrow donation from the sibling; each has advantages and disadvantages.  A cord blood sample with a suitable match and high numbers of stem cells is now preferable to bone marrow donation because research has shown that there is less rejection, fewer complications and higher survival rates.
  • If the relatives partially match: the doctor will determine if there is a suitable family-banked cord blood sample.
  • If the relatives do not match: the doctor will search internationally and nationally for a unrelated matching bone marrow donor or a donated cord blood unit that closely matches the patient.

Cord blood stored in a family bank is more commonly used by other family members (siblings and parents) rather than by the person who stored his/ her own cord blood. This is why it is called Family Banking. There is a 50% chance of finding a suitable match between siblings. Extended family members (Aunts/ Uncles, cousins, grandparents) may use a sample but the incidence of a match is lower.

Donating cord blood

Q: Why do ethnic minorities or families with mixed ethnic backgrounds have special needs?

A: Tissue types (also called HLA types) are inherited.  Patients are more likely to match someone who shares their racial or ethnic heritage. People of Aboriginal, African American, Asian, Southern European, or ethnically diverse communities have a low probability of finding a suitable match. Most bone marrow donor requests are unsuccessful for this group.

Bone Marrow stem cells transplants require that the tissue type of the donor must be an exact match to the recipient. Otherwise, complications will arise that will be fatal. 
Because cord blood does not need to match a patient as closely as donated bone marrow, cord blood transplants may offer hope to these patients. In 2008, 36% of cord blood units used in transplants facilitated by the NMDP in the USA went to patients from racially or ethnically diverse communities. Many patients, however, were unable to find a suitable sample and they were left untreated.

Q: Should racially and ethnically diverse parents donate to a public bank or store them at a family bank?

A: This is question that only the parents can decide.  Parents must understand that at all public banks, most samples are donated to research due to strict medical restrictions. If parents are OK with the fact that at least  7 out of every 10 samples are not stored, they are strongly encouraged to donate their cord blood to a public bank. 

The only way to ensure that those cells will be there in the future if they are needed is to pay the fees required to store it in a family bank. For many ethnically diverse patients, this will be their only chance of treatment.

Parents who do not decide to store their sample in a family bank should be strongly encouraged to donate it to a public bank such as Victoria Angel Registry of Hope.  Many more patients could be helped if cord blood is donated, especially from these communities:

  • African American/ Canadian
  • Aboriginal
  • Asian
  • Southern European
  • Hispanic and Latino
  • Mixed ethnic backgrounds

Q: Where can I donate cord blood in Canada?

A: The following Canadian cord blood banks provide public banking:  

  • Southern Ontario  - selected hospitals only:   Victoria Angel Registry of Hope Public Cord Blood Bank
  • Montreal/ Quebec City – selected hospitals only: Héma-Québec 
  • Alberta - Alberta Public Cord Blood Bank in Edmonton

Q: Why are there so few places to donate?

A: There is little governmental support or funding for public cord blood banking in Canada. The Quebec provincial government generously funds HemaQuebec’s program. The Alberta Cord Blood Bank and Victoria Angel Registry of Hope do not receive any funding. They rely on fund-raising efforts and the support of corporate sponsors.  The government is currently investigating a national public cord blood program however decisions have not been made about how these services will be provided.  Canada is far behind all other countries in this area. Currently most donated samples required for transplant must be purchased from international public banks. In 2008 alone, Canada’s health care system spent almost $3 million acquiring international samples for transplant in Canada.

Q: Can I donate if I am from a different part of Canada?

A: Currently, VAR’s  mandate is to accept parents who deliver in hospitals that we currently service with our in-house bedside pickup program. These nurses and doctors are well versed in collection techniques and procedures for public banking. Not only does this improve our storage rates but it also reduces costs to our cash-strapped non-profit organization. Parents who live outside the pick up may be considered for the program however their physician must be willing to review proper collection techniques and the parents must be willing to have a friend or family member deliver the sample to our laboratory. Alternatively, they will have to pay for a portion of the shipping costs. Please speak to our Nurses at 1 888 868 0888 for further information.

Q: When should I contact the cord blood bank in my area about donating umbilical cord blood?

A: VAR only accepts patients into the public banking program before 34 weeks gestation. (See other acceptance criteria on the website). This allows time for the VAR Medical Review Panel  to complete the required review of your application and allows our nurses to provide necessary information to you to ensure informed parental consent. In addition, the collection kit must be dispensed to the parents before labour begins.

Q: What if I decide that I want to donate later in my pregnancy ?

A: If you decide after 34 weeks, you may direct your child’s cord blood to our research projects. Otherwise, you will not be eligible for public banking. You could choose to participate in family banking. (fees apply)  www.cellsforlife.com

Q: Does it cost me anything to donate cord blood?

A: There is no cost to parents who are accepted into the Victoria Angel program.  All costs of collecting, processing and storing cord blood units will be covered by the public bank.   Parents must speak to their physician to ensure that the doctor and hospital will waive any collection fees.

Q: What do I need to do to donate my cord blood?

A:We strive to keep this simple. Refer to appropriate section of this website. It is clearly outlined in the Registration Section.

Q: Will donating my baby's umbilical cord blood change my delivery experience?

A: Doctors and midwives do not change their current birthing practices when cord blood is collected. The cord blood is collected after your baby has been safely delivered.  No blood is taken from your baby, only from the cord and placenta after the cord is cut.

Q: Can I donate if I'm having twins?

A: Most public banks, including VAR, cannot accept donations if you are having twins.

Q: How is our privacy protected after donating cord blood to a public cord blood bank?

A: Victoria Angel Registry of Hope protects the privacy of your family by keeping your names and contact information confidential. Names are not shared with any patient or transplant center. The baby's cord blood is identified by a number, never by name.

Q: Are cord blood transplant patients ever given information about their donor?

A: No. The transplant centre requires medical information about the sample itself  to ensure that the sample is safe for transplant. However, none of your identifying information is provided to the transplant centre or the cord blood recipient. They will not know your identity or the identity of your child nor will you know if the sample has been used or for whom.