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Most of the diseases for which HSCT is a standard treatment are disorders of blood cell lineage. The proliferation by which blood cells are formed from stem cells is illustrated in the side graphic (click on the image to expand it); you can also read about specific cell types in the immune system in more detail. In the United States, most health insurance providers will pay for a stem cell transplant if it is a “standard therapy” for the patient’s diagnosis.
Although cord blood is currently considered discarded human material, it should only be collected for banking with an institutional review board–approved protocol and with signed informed consent from a parent.42,43 Pertinent donor information communicated to the cord blood bank should be kept confidential by the cord blood bank and used only to report important medical information obtained during the cord blood collection, processing, and screening process that is relevant to the safety of the donor and family. If cord blood was collected from a newborn who subsequently developed a genetic, immunologic, or malignant neoplastic disorder, parents should notify the cord blood bank so that the unit is not used for transplantation. All cord blood units banked for potential use should be tested for infectious diseases, similar to those tested in a blood bank, and for hereditary hematologic diseases. The informed consent must contain information pertaining to what tests are to be performed on the cord blood and how the parents will be informed if test results are abnormal. Pediatricians should be aware that legal cases relating to the duty of a physician to warn parents about the risks of inheriting a genetic disease are new and untested. Pediatricians should remain vigilant, because future cases may define who has a legal duty to notify parents about genetic abnormalities identified during cord blood testing. Informed consent should be obtained before the onset of active labor and before cord blood collection.
The cord blood of your baby is an abundant source of stem cells that are genetically related to your baby and your family. Stem cells are dominant cells in the way they contribute to the development of all tissues, organs, and systems in the body.
Please tell us a little about yourself. A Newborn Stem Cell Educator may call to discuss your options and answer any questions you may have. You may also receive additional information about saving or donating newborn stem cells.
The stored blood can’t always be used, even if the person develops a disease later on, because if the disease was caused by a genetic mutation, it would also be in the stem cells. Current research says the stored blood may only be useful for 15 years.
Cord blood donation should be discouraged when cord blood stored in a bank is to be directed for later personal or family use, because most conditions that might be helped by cord blood stem cells already exist in the infant’s cord blood (ie, premalignant changes in stem cells). Physicians should be aware of the unsubstantiated claims of private cord blood banks made to future parents that promise to insure infants or family members against serious illnesses in the future by use of the stem cells contained in cord blood. Although not standard of care, directed cord blood banking should be encouraged when there is knowledge of a full sibling in the family with a medical condition (malignant or genetic) that could potentially benefit from cord blood transplantation.
Some financial aid is available for families that opt for private cord blood banking. If you have a sick child who could benefit from umbilical cord blood, some cord blood banks offer programs in which the bank will cover free cord blood processing and storage if the baby has a biological sibling with certain diseases. Certain insurance companies may pitch in if that sibling needs to be treated with the cord blood in the near future, Dr. Verter says.
Four main types of physical conditions are treated with stem cell transplants: cancers, blood disorders, congenital metabolic disorders, and immunodeficiencies (see Table 1). Examples of cancers that are treated with stem cells are both lymphoma and leukemia. Nonmalignant hemologic disorders also account for a fair share of the recipients of stem cells. Examples of these blood disorders are various types of anemias, such as sickle-cell anemia and Fanconi’s anemia (the first disorder treated with umbilical cord blood stem cells). Stem cells have also been used to treat various metabolic disorders, such as adrenoleukodystrophy. The fourth major category of uses for stem cells is in treating immunodeficiencies, such as Duncan’s disease or adenosine deaminase deficiency (Drew, 2005; Moise, 2005).
Research on stem cell transplants began in the 1950s, with successful bone marrow transplants occurring in the 1970s, often to treat cancer patients whose own bone marrow was destroyed by chemotherapy and radiation. The first successful umbilical cord blood stem cell transplant was reported as occurring in the late 1980s. The recipient was a 6-year-old American boy from North Carolina who was treated for Fanconi’s anemia (a genetic disorder) at Hospital St. Louis in Paris, France, using cord blood obtained from his younger sister’s birth. Interestingly, more than 20 years after the transplant, this young man is alive and well. Not only did he survive long term, but both his immune system and his blood were transformed by the transplant of his sister’s cord blood stem cells. Soon after this first documented cord blood stem cell transplant, the first public umbilical cord blood bank was established in 1991 in New York (McGuckin & Forraz, 2008).
Direct-donation umbilical cord blood banks function as an amalgamation of public and private banks. Direct-donation banks collect cord blood without charging fees. In addition, they accept autogenous donations and reserve them only for the family, especially for a family whose infant has a sibling with a disorder that may be treated with umbilical cord blood stem cells (Moise, 2005).
CBR’s quality control team performs over 5 million sample checks per year which includes 3 million temperature checks, 20,000 environmental sterility tests, and 95 control checks on each sample to ensure processes are working correctly so that your family’s stem cells are kept protected. At CBR we take the safe storage of your stem cells seriously.
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.
Your baby’s cord blood could be a valuable resource for another family. From foundations to non-profit blood banks and medical facilities, there are numerous locations that will collect, process, and use the stem cells from your baby’s cord blood to treat other people.
The American College of Obstetricians and Gynecologists (ACOG, 2008) recommends giving pregnant women information about umbilical cord blood banking that is free from bias. According to ACOG, the chance of a child or family member needing a stem cell transplant is about 1 in 2,700. Therefore, ACOG recommends the collection and banking of cord blood only when an immediate family member has a known diagnosis for which stem cells are currently being used for treatment, and not for potential future uses.
Cade Hildreth is the Founder of BioInformant.com, the world’s largest publisher of stem cell industry news. Cade is a media expert on stem cells, recently interviewed by the Wall Street Journal, Los Angeles Business Journal, Xconomy, and Vogue Magazine.
Cord blood, which is harvested from the umbilical cord right after a baby is born, is marketed as a treatment for diseases such as leukemia and sickle cell disease, and as a potential source of cells for regenerative medicine – a cutting-edge field of medicine studying how to repair tissues damaged by everything from heart disease to cerebral palsy.
Anak S, Saribeyoglu ET, Bilgen H, et al. Allogeneic versus autologous versus peripheral stem cell transplantation in CR1 pediatric AML patients: a single center experience. Pediatr Blood Cancer.2005;44 :654– 659
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.
Another contributor to cord blood banking costs is the quality of the collection kit. Cheaper banks typically use flimsy collection kits. To insure the survival of newborn stem cells, the shipping container should be thermally insulated to maintain kit temperature during cord blood shipments.
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.
Let’s look back at the expectant couple in my childbirth class who asked about banking their infant’s umbilical cord blood. They should not base their decision to bank the umbilical cord blood on the type of anticoagulant used to preserve the sample; likewise, they should not obtain all of their information on cord blood banking from the private cord blood bank, whose major agenda is to gain another client. Instead, they must be encouraged to research various resources for reliable information (see Table 4). If they have evidence that stem cells are used currently to treat a specific disease process that is affecting a family member, and is not simply a proposed idea, then it might be in their best interest to privately bank the umbilical cord blood. However, they should be aware that simply banking the cord blood does not ensure a cure, and they would most likely be banking the blood not for the current baby, but for some other family member. They must also be aware of the cost involved in the banking process. Finally, if they do not have a relative with a disease process treated with stem cells or there is no evidence that stem cells are used to treat the diseases that are known to be in their family, then they should consider public banking of the umbilical cord blood (if they have access to a public cord blood bank).
The baby’s cord blood will be processed and stored in a laboratory facility, often referred to as a blood bank. The cord blood should be processed and stored in a facility that is accredited by the American Association of Blood Banks (AABB) for the purpose of handling stem cells.
Ozkaynak MF, Sandoval C, Levendoglu-Tugal O, Jayabose S. A pilot trial of tandem autologous peripheral blood progenitor cell transplantation following high-dose thiotepa and carboplatin in children with poor-risk central nervous system tumors. Pediatr Hematol Oncol.2004;21 :635– 645
Cord blood holds promise for future medical procedures. Scientists are still studying more ways to treat more diseases with cord blood. At Duke University, for example, researchers are using patients’ own cord blood in trials for cerebral palsy and Hypoxic ischemic encephalopathy (a condition in which the brain does not receive enough oxygen). Trials are also under way for the treatment of autism at the Sutter Neuroscience Institute in Sacramento, California.
Cord Blood Registry® (CBR®) is the world’s largest newborn stem cell company. Founded in 1992, CBR is entrusted by parents with storing samples from more than 600,000 children. CBR is dedicated to advancing the clinical application of cord blood and cord tissue stem cells by partnering with institutions to establish FDA-regulated clinical trials for conditions that have no cure today.
Cord blood can only be collected at birth, that’s why it’s important to do your research well before your baby’s due date. Watch this short video to learn exactly how cord blood is collected, processed and stored.
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.
Professionals affiliated with institutions or organizations that promote for-profit placental blood stem cell banking should make annual financial-disclosure and potential-conflicts-of-interest statements to an appropriate institutional review committee that possesses oversight authority.
Rubinstein P, Dobrila L, Rosenfield RE, et al. Processing and cryopreservation of placental/umbilical cord blood for unrelated bone marrow reconstitution. Proc Natl Acad Sci USA. 1995;92 :10119– 10122
In recent years, umbilical cord blood, which contains a rich source of hematopoietic stem and progenitor cells, has been used successfully as an alternative allogeneic donor source to treat a variety of pediatric genetic, hematologic, immunologic, and oncologic disorders. Because there is diminished risk of graft-versus-host disease after transplantation of cord stem cells using matched related donors, the use of less-than-completely matched HLA cord blood stem cells may incur less risk of graft-versus-host disease than mismatched cells from either a related or unrelated “walking” donor, although this remains to be proven. Gene-therapy research involving modification of autologous cord blood stem cells for the treatment of childhood genetic disorders, although experimental at the present time, may prove to be of value. These scientific advances have resulted in the establishment of not-for-profit and for-profit cord blood–banking programs for allogeneic and autologous cord blood transplantation. Many issues confront institutions that wish to establish or participate in such programs. Parents often seek information from their physicians about this new biotechnology option. This document is intended to provide information to guide physicians in responding to parents’ questions about cord blood donation and banking and the types and quality of cord blood banks. Provided also are recommendations about appropriate ethical and operational standards, including informed consent policies, financial disclosures, and conflict-of-interest policies for physicians, institutions, and organizations that operate or have a relationship with cord blood–banking programs.
4. Parkinson’s disease. Stem cells may also help those who suffer from Parkinson’s, a neurodegenerative disorder that can cause tremors, stiffness, and other movement and speech problems. Studies show that embryonic stem cells can give rise to the dopamine-making neurons that Parkinson’s patients lack. When transplanted into rodents with a Parkinson’s-like disorder, those replacement brain cells improved the animals’ motor function.
Options for Umbilical Cord Blood Banking and Donation—As expectant parents, learn how umbilical cord blood can help others through public donation, family (private) cord blood banking, or directed donation for a biological sibling.
The main disadvantage of cord blood transplants is that they take at least a week longer to “engraft”, which means repopulate the patient’s blood supply so that cell counts reach minimum acceptable levels. The longer engraftment time is a risk because it leaves the patient vulnerable to a fatal infection for a longer time.
One of the key things you’ll want the cord blood bank’s representative to explain to you is how the cord blood bank collects and stores cord blood. Collection and storage methods may differ across cord blood banking companies, and you’ll want to be sure that the cord blood bank complies with all federal standards.2
There is little doubt that scientists believe umbilical cord blood stem cells hold promise for the future. Cord blood stem cells are already used to treat blood disorders such as aplastic anemia, and research is underway to determine if they can treat other more common conditions like type 1 diabetes. But many experts question whether many companies’s marketing materials confuse or even mislead parents about the usefulness of private banking.
That fetal blood holds all sorts of interesting — and potentially therapeutic — cells and molecules. This realization has, in some cases, changed the way the umbilical cord and placenta are handled during birth. Instead of tossing it aside, some doctors, scientists and parents are choosing to bank this fetal blood — harvesting it from the baby’s umbilical cord and placenta, freezing it and storing it away for later.
This is only the beginning. Newborn stem cell research is advancing, and may yield discoveries that could have important benefits for families. CBR’s mission is to support the advancement of newborn stem cell research, with the hope that the investment you are making now will be valuable to your family in the future. CBR offers a high quality newborn stem cell preservation system to protect these precious resources for future possible benefits for your family.
In a number of genetic, hematologic, immunologic, metabolic, and oncologic disorders, reconstitution of bone marrow (transplantation) can be a potentially life-saving procedure.1–16 Allogeneic (related or unrelated) or autologous (self) bone marrow or peripheral blood stem cells are the usual sources of hematopoietic progenitor cells to achieve this goal. If autologous stem cells are not available or cannot be used, the best option for successful reconstitution therapy is to secure stem cells from an HLA-matched sibling.1,3,11 Close matching confers a higher probability of successful engraftment and minimizes the risk of potentially fatal graft-versus-host disease. Unfortunately, there is only a 25% chance for identifying a full HLA match in a sibling donor.17,18