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Tracey said she felt lucky since she banked Anthony’s cord blood with a private company. And Osteopetrosis is one of 80 diseases listed by many cord blood companies in their marketing material as treatable with stem cells.
There are some diseases on the list (like neuroblastoma cancer) where a child could use his or her own cord blood. However, most of the diseases on the proven treatment list are inherited genetic diseases. Typically, a child with a genetic disease would require a cord blood unit from a sibling or an unrelated donor.
As cord blood is inter-related to cord blood banking, it is often a catch-all term used for the various cells that are stored. It may be surprising for some parents to learn that stored cord blood contains little of what people think of as “blood,” as the red blood cells (RBCs) can actually be detrimental to a cord blood treatment. (As we’ll discuss later, one of the chief goals of cord blood processing is to greatly reduce the volume of red blood cells in any cord blood collection.)
After all is said and done, the cost to collect, test, process and store a donated cord blood collection at a public bank is estimated to be $1,200 to $1,500 dollars for each unit banked. That does not include the expense for the regulatory and quality systems needed to maintain licensure, or the cost of collecting units that are discarded because they don’t meet standards.
There are several cord blood banks that are accredited by the American Association of Blood Banks. Most offer information on cord blood banking and provide private cord blood banking services. With a little research, you should be able to locate a credible cord blood bank online.
The use of cord blood is determined by the treating physician and is influenced by many factors, including the patient’s medical condition, the characteristics of the sample, and whether the cord blood should come from the patient or an appropriately matched donor. Cord blood has established uses in transplant medicine; however, its use in regenerative medicine is still being researched. There is no guarantee that treatments being studied in the laboratory, clinical trials, or other experimental treatments will be available in the future.
Students who register to donate blood three or more times during their high school career earn a Red Cord to wear during graduation events. Seniors must complete the requirement by May 15 (or by the date of their school’s final blood drive of the year, whichever is later).
Both public and family cord blood banks must register with the US Food and Drug Administration (FDA), and since Oct. 2011 public banks also need to apply for an FDA license. All cord blood banks are required by federal law to test the blood of the mother for infectious diseases. At public banks the screening is usually more extensive, similar to the tests performed when you donate blood. The typical expense to a public bank is $150 per unit.
To minimize potential side effects, doctors most often use transplanted stem cells that match the patient’s own stem cells as closely as possible. People have different sets of proteins, called human leukocyte-associated (HLA) antigens, on the surface of their cells. The set of proteins, called the HLA type, is identified by a special blood test.
We are genetically closest to our siblings. That’s because we inherit half of our DNA from our mother and half from our father, so the genes we inherit are based on a chance combination of our parents’. Our siblings are the only other people inheriting the same DNA.
Cord Blood Registry is headquartered in South San Francisco, California. CBR owns their 80,000 square foot laboratory located in Tucson, Arizona. CBR’s laboratory processes cord blood collections seven days a week, 365 days a year. The state-of-the-art facility has the capacity to store the stem cell samples of five million newborns.
However, the American Academy of Pediatrics strongly encourages umbilical cord donations for general research purposes. Donors are encouraged to contact a cord blood bank by the 35th week of pregnancy.
Lead image of baby’s umbilical cord from Wikimedia Commons. Possible human blood stem cell image by Rajeev Gupta and George Chennell. Remaining images of blood sample bags and red blood cells from Wellcome Images.
Therapies with cord blood have gotten more successful. “The outcomes of cord blood transplants have improved over the past 10 years because researchers and clinicians have learned more about dosing cord blood, picking better matches, and giving the patient better supportive care as they go through the transplant,” says Joanne Kurtzberg, M.D., director of the pediatric bone marrow and stem cell transplant program at Duke University.
Anthony’s doctors found a match for him through the New York Blood Center’s National Cord Blood Program, a public cord blood bank. Unlike private banks, public banks do not charge to collect cord blood, they charge a patients insurance company when cells are used. And once it is entered in the public system, the blood is available to anyone who needs it.
The blood that remains in the umbilical cord and the placenta after birth is called “cord blood”. Umbilical cord blood, umbilical cord tissue, and the placenta are all very rich sources of newborn stem cells. The stem cells in the after birth are not embryonic. Most of the stem cells in cord blood are blood-forming or hematopoietic stem cells. Most of the stem cells in cord tissue and the placenta are mesenchymal stem cells.
In Europe, Canada, and Australia use of cord blood is regulated as well. In the United Kingdom the NHS Cord Blood Bank was set up in 1996 to collect, process, store and supply cord blood; it is a public cord blood bank and part of the NHS.
You need to plan ahead if you decide to store cord blood. Banks need to be notified four to six weeks before your due date if you’re interested in donating blood. Once you do decide on a public bank, those affiliated with the Be the Match registry (bethematch.org/cord) will cover the costs of collecting, processing, and storing cord blood units.
The American Academy of Pediatrics supports efforts to provide information about the potential benefits and limitations of cord blood banking and transplantation so that parents can make an informed decision. In addition, the American College of Obstetricians and Gynecologists recommends that if a patient requests information on umbilical cord blood banking, balanced information should be given. Cord blood education is also supported by legislators at the federal and state levels. In 2005, the National Academy of Sciences published an Institute of Medicine (IoM) report titled “Establishing a National Cord Blood Stem Cell Bank Program”.
When you consider that public banks can only expect to ship 1-2% of their inventory for transplant, you can quickly understand why most public banks are struggling to make ends meet. That struggle means that fewer collection programs are staffed, and there are fewer opportunities for parents to donate to the public good. We said earlier that public banks only keep cord blood donations over a minimum of 900 million cells, but today most public banks have raised that threshold to 1.5 billion cells. The reason is that the largest units are the ones most likely to be used for transplants that bring income to the bank. Family cord blood banks do not need to impose volume thresholds because they have a profit margin on every unit banked.
The stem cells used in PBSCT come from the bloodstream. A process called apheresis or leukapheresis is used to obtain PBSCs for transplantation. For 4 or 5 days before apheresis, the donor may be given a medication to increase the number of stem cells released into the bloodstream. In apheresis, blood is removed through a large vein in the arm or a central venous catheter (a flexible tube that is placed in a large vein in the neck, chest, or groin area). The blood goes through a machine that removes the stem cells. The blood is then returned to the donor and the collected cells are stored. Apheresis typically takes 4 to 6 hours. The stem cells are then frozen until they are given to the recipient.
Part of the reason for the dominance of these three companies in terms of the total number of units stored is that they are three of the oldest cord blood banks within the U.S., founded in 1992, 1993, and 1989, respectively. All three of these cord blood banks also support cord blood research and clinical trials.
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Research is being conducted using cord blood cells to analyze immune response and other factors that may eventually shed light on causes and treatment of MS. However, at present there is no treatment available involving cord blood cells. Nor do we know of any sites that are looking for cord blood specifically for MS research.
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A large challenge facing many areas of medical research and treatments is correcting misinformation. Some companies advertise services to parents suggesting they should pay to freeze their child’s cord blood in a blood bank in case it’s needed later in life. Studies show it is highly unlikely that the cord blood will ever be used for their child. However, clinicians strongly support donating cord blood to public blood banks. This greatly helps increase the supply of cord blood to people who need it.
Another type of cell that can also be collected from umbilical cord blood are mesenchymal stromal cells. These cells can grown into bone, cartilage and other types of tissues and are being used in many research studies to see if patients could benefit from these cells too.
Current research aims to answer these questions in order to establish whether safe and effective treatments for non-blood diseases could be developed in the future using cord blood. An early clinical trial investigating cord blood treatment of childhood type 1 diabetes was unsuccessful. Other very early stage clinical trials are now exploring the use of cord blood transplants to treat children with brain disorders such as cerebral palsy or traumatic brain injury. However, such trials have not yet shown any positive effects and most scientists believe much more laboratory research is needed to understand how cord blood cells behave and whether they may be useful in these kinds of treatments
Your baby may be able to use his or her own cord blood in the treatment of certain non-genetic diseases and cancers, like neuroblastoma. Participation in some clinical trials, like recent autism and cerebral palsy trials, require children to have access to their own cord blood.
Osteopetrosis is a genetic disease, so this means that doctors could use a sibling’s cord blood cells to treat Anthony, but they cannot use his own cells because the disease is in every cell in his body. In fact, a majority of the diseases listed in private banking firms’ marketing material as treatable with stem cells are genetic diseases.
Banking of stem cells from cord blood began in 1994 with the foundation of the New York Blood Centre Cord Blood Bank. The field of umbilical cord blood storage has matured considerably over the last two decades. We continue to learn more about the long-term effects of cryo-preservation on the cells, which has resulted in increased storage times.
The evolution of stem cell therapies has paved the way for further research being conducted through FDA-regulated clinical trials to uncover their potential in regenerative medicine applications. Cord Blood Registry is the first family newborn stem cell company to partner with leading research institutions to establish FDA-regulated clinical trials exploring the potential regenerative ability of cord blood stem cells to help treat conditions that have no cure today, including: acquired hearing loss, autism, cerebral palsy, and pediatric stroke. In fact, 73% of the stem cell units released by CBR have been used for experimental regenerative therapies – more than any other family cord blood bank in the world.
If siblings are a genetic match, a cord blood transplant is a simple procedure that is FDA approved to treat over 80 diseases. However, there are a few considerations you should make before deciding to only bank one of your children’s blood:
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Frances Verter, PhD, founded the Parent’s Guide to Cord Blood in 1998 and has been a Scientific Advisor to Community Blood Services since 2007. In 2011 the NMDP presented her with their Lifeline Award in recognition of her efforts to improve public education about cord blood donation.
* Disclaimer: Banking cord blood does not guarantee that treatment will work and only a doctor can determine when it can be used. Cord tissue stem cells are not approved for use in treatment, but research is ongoing.
Most stored cord blood is discarded. At public cord blood banks, a unit of stored cord blood has a greater chance of being used to help a sick child or used toward stem cell research. Private cord blood banks, on the other hand, eventually throw away blood that a family no longer wants to store or use.
When the collection is complete, we send a courier to your location to pick up your collection kit and transport it to ViaCord’s Processing Lab. Once at our lab, our lab specialist get to work processing the cord blood to get you the highest volume and quality of stem cells possible.
In March 2004, the European Union Group on Ethics (EGE) has issued Opinion No.19 titled Ethical Aspects of Umbilical Cord Blood Banking. The EGE concluded that “[t]he legitimacy of commercial cord blood banks for autologous use should be questioned as they sell a service, which has presently, no real use regarding therapeutic options. Thus they promise more than they can deliver. The activities of such banks raise serious ethical criticisms.”