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6. Lou Gehrig’s disease. There’s hope that stem cells could help those with Lou Gehrig’s disease, also known as amyotrophic lateral sclerosis, or ALS. The crippling disease comes with a grim prognosis: Many die within three to five years of diagnosis, as their bodies progressively damage muscle-controlling motor neurons in the brain and spinal cord. Scientists are exploring ways to coax stem cells into becoming motor neurons that could be transplanted into ALS patients, restoring their ability to move.
Dennis Michael Todd, PhD, joined Community Blood Services as its President and CEO in 2000. Community Blood Services operates the NJ Cord Blood Bank and The HLA Registry bone marrow donor center, both of which are affiliated with the National Marrow Donor Program (NMDP). In 2012, the blood center expects to distribute over 85,000 units of red cells and 20,000 platelets to hospitals and medical centers throughout northern NJ and Orange County, NY. Dr. Todd is presently a member of the NMDP Executive Committee and Chairman of the Finance Committee. He is a member of the International Society for Cellular Therapy (ISCT), the International Society for Stem Cell Research (ISSCR), the AABB, the American Association of Bioanalysts, and the New Jersey Society of Blood Bank Professionals.
Because of their ability to regenerate, umbilical cord stem cells may provide the answers to conditions such as various forms of heart disease and diabetes. Medical researchers studying umbilical cord blood stem cells have recorded several positive observations in animal studies, including instances where cord blood stem cells have improved vascular functions in injured tissue, as well as blood flow and improved overall heart function.
Transplant science is constantly improving. Several companies are bringing to market methods of “expanding” the stem cell population in the laboratory, and these methods are starting to be applied in clinical trials.
The choices expectant parents make today go beyond finding out the gender of their baby. They span beyond deciding whether to find out if their child, still in the womb, may potentially have a genetic disorder. Today, many parents must decide whether to store their baby’s umbilical cord blood so it will be available to heal their child if at any point in the child’s lifetime he or she becomes sick.
StemCyte™ has extensive experience providing cord blood units for transplants in children and adults with life-threatening diseases. Other private cord blood banks may have provided family-related cord blood for transplants, but only StemCyte™’s cord blood units have been used to 2000 plus transplants to date.
One of the first things I learned is that the couples in my childbirth class were not unique. In fact, research indicates that most pregnant women are underinformed about the issue of cord blood banking (Fox et al., 2007). While reviewing the literature on cord blood banking, I also found that the information available for nurses and childbirth educators often comes from private cord blood banks or their employees (Cord Blood Registry, 2009; Wolf, 1998, 1999), thus introducing the chance of bias.
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One of the factors that influence engraftment time is cell dose (Gunning, 2007). Cell dose is directly related to the volume of umbilical cord blood collected. Cell dose refers to the amount of useful stem cells in the sample of blood. Because of the limited volume of cells collected from cord blood, the amount of stem cells in cord blood is approximately 10% less than the amount obtained from bone marrow (Moise, 2005). A single unit of umbilical cord blood usually contains 50 to 200 ml of blood (Gonzalez-Ryan et al., 2000). If an amount of cord blood is less than this minimum volume, the unit is discarded as being unsatisfactory because the cell dose of the sample would not be high enough. Collecting an insufficient volume of cord blood occurs in about 50% or more cases of cord blood collection (Drew, 2005). In general, fewer stem cells are needed for cord blood transplantation, and usually a volume of 50 to 100 ml of cord blood will provide enough of a cell dose for a child or small adult. However, should the recipient need additional stem cells, it is impossible to obtain more stem cells from the infant because the cord blood volume is a limited amount (Percer, 2009).
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Lewis ID, Almeida-Porada G, Du J, et al. Umbilical cord blood cells capable of engrafting in primary, secondary, and tertiary xenogeneic hosts are preserved after ex vivo culture in a noncontact system. Blood.2001;97 :3441– 3449
Maschan AA, Trakhtman PE, Balashov DN, et al. Fludarabine, low-dose busulfan and antithymocyte globulin as conditioning for Fanconi anemia patients receiving bone marrow transplantation from HLA-compatible related donors. Bone Marrow Transplant.2004;34 :305– 307
Since the first unrelated cord blood–banking program was started at the New York Blood Center in 1991,40 a number of public cord blood–banking programs have been established throughout the world to collect, type, screen for infection, and cryogenically store cord blood for potential transplantation to unrelated and related recipients.41–49 Some of these programs had been funded by the National Heart, Lung, and Blood Institute (National Institutes of Health), the National Marrow Donor Program, the American Red Cross, or academic programs based in not-for-profit organizations. One cord blood program initiated by the National Institutes of Health exists solely for sibling donor collection for families who are likely to consider cord blood transplantation because a first-degree relative has been diagnosed with a disease that is treatable with allogeneic transplantation. In this bank, families own the cord blood, and it is shipped to a designated transplant center in the event a medical decision to proceed with cord blood transplantation is made.50
The next step at either a public or family bank is to process the cord blood to separate the blood component holding stem cells. The final product has a volume of 25 milliliters and includes a cryoprotectant which prevents the cells from bursting when frozen. Typical cost, $250 to $300 per unit.
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.
ViaCord’s Sibling Connection Program, a dedicated transplant program for siblings, was designed to help families in need of a stem cell transplant. This program provides ViaCord’s cord blood banking services at no cost to expecting parents. A family with a child with an established diagnosis of a disease that is currently treatable with sibling cord blood may be eligible.
Tracey Dones of Hicksville, N.Y., paid to bank her son Anthony’s cord blood. But four months after he was born, Anthony was diagnosed with osteopetrosis, a rare disease that causes the body to produce excess bone, leads to blindness, and can be fatal if left untreated.
Wagner JE, Rosenthal J, Sweetman R, et al. Successful transplantation of HLA-matched and HLA-mismatched umbilical cord blood from unrelated donors: analysis of engraftment and acute graft-versus-host disease. Blood.1996;88 :795– 802
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.
The main purpose of a cord blood company is to store umbilical cord blood for families in case they need to access it for future use. Cord blood from a baby is stored because it has the potential to help treat blood or immune system diseases. There are both private and public cord blood companies, sometimes referred to as cord blood banks.
Donating your baby’s cord blood is a wonderful gift. The cells may be the perfect match for someone in desperate need of a stem cell transplant. Unfortunately, cord blood banking is still an extremely new industry; there are only a small handful of public banks in certain regions, and those banks are primarily focused on collecting cord blood stem cells from Hispanic and African American families due to the genetic diversity associated with those families. Please visit http://www.marrow.org/ for a list of public banks with their contact information. One other note: It is also a wonderful gift to be a bone marrow donor, and becoming one is much more available to the public, unlike cord blood banking. Please call your local blood bank or the American Red Cross for additional information on how to become a bone marrow donor.
Description: ViaCord, a PerkinElmer company, is an industry leading Cord Blood Collection and Storage company that was established in 1993. Over the years ViaCord has added services such as Cord Tissue collection & storage, and newborn genetic screening.
Priority shipping: Cord blood companies that use priority shipping services have families ship them cord blood in a heavily insulated box, which arrives at the cord bank at a certain time, but does not guarantee that the blood remains at a certain temperature.
Since 1988, cord blood transplants have been used to treat over 80 diseases in hospitals around the world. Inherited blood disorders such as sickle cell disease and thalassemia can be cured by cord blood transplant. Over the past decade, clinical trials have been developing cord blood therapies for conditions that affect brain development in early childhood, such as cerebral palsy and autism.
A number of private for-profit companies have been established that encourage parents to bank their children’s cord blood for their own autologous use or for directed donor allogeneic use for a family member should the need arise. Parents have been encouraged to bank their infants’ cord blood as a form of “biological insurance.” Physicians, employees, and/or consultants of such companies may have potential conflicts of interest in recruiting patients because of their own financial gain. Annual disclosure of the financial interest and potential conflicts of interest must be made to institutional review boards that are charged with the responsibility of mitigation of these disclosures and risks. Families may be vulnerable to the emotional effects of marketing for cord blood banking at the time of birth of a child and may look to their physicians for advice. No accurate estimates exist of the likelihood of children to need their own stored cord blood stem cells in the future. The range of available estimates is from 1 in 1000 to more than 1 in 200000.51 The potential for children needing their own cord blood stem cells for future autologous use is controversial presently.51 There also is no evidence of the safety or effectiveness of autologous cord blood stem cell transplantation for the treatment of malignant neoplasms.51 Indeed, there is evidence demonstrating the presence of DNA mutations in cord blood obtained from children who subsequently develop leukemia.52 Thus, an autologous cord blood transplantation might even be contraindicated in the treatment of a child who develops leukemia.
While some companies may advertise their cord tissue preservation service as “treatment-ready”, this is a misnomer. In the U.S. there are currently no treatments available that use cord tissue cells. Without knowing what the treatment protocols may look like in the future, preserving the cord tissue sample whole today means that all of the available cell types in this precious resource may be available to your family in the future.
3. Families should consider is whether the odds given for the “average baby” apply to them. Some families do have a higher predisposition to cancer and immune disorders and would be far more likely to benefit from cord blood banking than the statistics indicate.
Umbilical cord blood was once thought of as a waste product of the birthing experience, but now it is valued for its content of stem cells. Today, more than 20 years after the first successful umbilical cord blood stem cell transplant, more families are seeking information about whether or not to invest in saving their newborn’s umbilical cord blood. Saving the cord blood in public banks is a worthy undertaking for any family. It is recommended that expectant families only consider cord blood banking in private banks when they have a relative with a known disorder that is already treatable by stem cell transplants. Moreover, expectant families should not rely on commercial cord blood banks as their sole source of information about cord blood banking.
CBR’s lab stores over 700,000 cord blood and cord tissue stem cell units. As a result of our size, we are able to continuously invest in clinical trials, product innovation, and our lab and storage facility. We own our state-of-the-art facility. And, we continually invest in quality and security. This means our families will always have access to their stem cells.
Families with a history of diseases can store cord blood in a bank. These families can access it should a person get sick with an immune system or blood disease, like leukemia or sickle-cell anemia, later in life.
The procedure of cord clamping can be delayed for a considerable period of time. However, the delay has to be a brief one. It cannot be delayed more than one or two minutes. If the procedure of clamping the cord is delayed for too long, the blood present in the cord might clot and once the blood clots it does not benefit anyone. Neither does it help your baby nor can it be collected for storage.
Make no mistake, cord banks are businesses to the core. And just like any other business, there’s always the possibility of a cord bank failing. Which is why we suggest begining your search by checking the company’s experience, the number cord blood units stored, and how many of these cord blood units have been used for transplants.
Marketing materials by Viacord and Cord Blood Registry, the two largest companies, do not mention that cord blood stem cells cannot be used by the child for genetic diseases, although the fine print does state that cord blood may not be effective for all of the listed conditions.
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.
Entz-Werle N, Suciu S, van der Werff Ten Bosch J, et al. Results of 58872 and 58921 trials in acute myeloblastic leukemia and relative value of chemotherapy vs allogeneic bone marrow transplantation in first complete remission: the EORTC Children Leukemia Group report. Leukemia.2005;19 :2072– 2081
Umbilical cord blood transplants are now used to treat numerous types of immune- and blood-related disorders and genetic diseases. Cord blood (CB) banks play an important role in these transplants by processing and storing CB units. In addition to their therapeutic potential, these banks raise ethical and regulatory questions, especially in emerging markets in the Arab world. In this article, the authors review CB banking in five countries in the region, Jordan, Saudi Arabia, Egypt, Qatar, and the United Arab Emirates, selected for their different CB banking policies and initiatives. In assessing these case studies, the authors present regional trends and issues, including religious perspectives, policies, and demographic risk factors. This research suggests strong incentives for increasing the number of CB units that are collected from and available to Arab populations. In addition, the deficit in knowledge concerning public opinion and awareness in the region should be addressed to ensure educated decision-making.
There are no health risks related to cord blood collection. Cord blood is retrieved from the umbilical cord after it has been cut, thus preventing any pain, discomfort, or harm. This process is completely safe.
With umbilical cord blood harvesting, the harvested cord blood does not come from the newborn baby itself; instead, the cord blood is harvested from the blood that remains in the umbilical cord after birth. Umbilical cord blood is never harvested from either mother or child, but only from the unused blood in the umbilical cord, which would otherwise be discarded waste. The harvesting procedure takes only a few minutes and there is zero danger to either the parent or the baby.
An additional cost that is borne only by public banks is the “HLA typing” that is used to match donors and patients for transplants. This is an expensive test, running about $75 to $125 per unit. Family banks always defer this test until it is known whether a family member might use the cord blood for therapy.
Some brochures advertising private cord blood banking show children with cerebral palsy, a neurological disorder, who were treated with their own stem cells. In the case of Cord Blood Registry, the company lists all stem cell transplants conducted at Duke University. In a list of individuals treated in their “stem cell therapy data” cerebral palsy is listed. However, transplants were part of an early research study and studies of efficacy are just now underway.
Description: MAZE Cord Blood Laboratories provides a low cost cord blood banking option but maintains a high quality and level of service. They keep costs down by limiting their marketing spend and relying on referrals.
In 1989, Cryo-Cell International was founded in Oldsmar, FL, making it the oldest cord blood bank in the world. By 1992, it began to store cord blood. In addition to pursuing a wide variety of accreditations (AABB, cGMP, and ISO 1345), it was the first private cord blood bank in the U.S. to be awarded FACT accreditation. In 2017, it initiated a $100,000 Engraftment Guarantee (previously $75,000), the highest quality guarantee of any U.S. cord blood bank.
Preserving stem cells does not guarantee that the saved stem cells will be applicable for every situation. Ultimate use will be determined by a physician. Please note: Americord Registry’s activities are limited to collection of umbilical cord tissue from autologous donors. Americord Registry’s possession of a New York State license for such collection does not indicate approval or endorsement of possible future uses or future suitability of cells derived from umbilical cord tissue.
Kasamon YL, Jones RJ, Piantadosi S, et al. High-dose therapy and blood or marrow transplantation for non-Hodgkin lymphoma with central nervous system involvement. Biol Blood Marrow Transplant.2005;11 :93– 100
AABB accredited: Some cord blood companies have received extra accreditation from the AABB, or the American Association of Blood Banks, which means they meet a certain standard of service and accuracy of work.
Cord blood can be used in the treatment of nearly 80 life-threatening diseases – from cancers to blood disorders. It’s also being used in regenerative medicine research to help kids with conditions like Autism and Cerebral Palsy.
2 Cordblood.com, (2014). Cord Blood Stem Cell Banking | Cord Blood Registry | CBR. [online] Available at: http://www.cordblood.com/cord-blood-banking-cost/cord-blood-stem-cells [Accessed 22 March. 2017].
A courier collection service. Private banks have a person pick up your donated cord blood, which helps ensure that it arrives at your chosen bank quickly and doesn’t get lost along the way, and that the temperature will remain consistent enough to be accepted at the lab. (Public banks usually send an insulated kit for you to preserve and mail the cord blood.)
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.