Cord Blood Donation Its clinical uses and the OB role

The NATIONAL MARROW DONOR PROGRAM ® operates the Be The Match Registry ®. 2 Learning objectives This training will provide information on: Role of OBs in educating about cord blood options, with an emphasis on public donation Advantages of cord blood Clinical need and uses of cord blood Common questions from patients Best practices for quality cord blood collection Resources to learn more about cord blood

The NATIONAL MARROW DONOR PROGRAM ® operates the Be The Match Registry ®. 3 OBs play a leading role Research indicates that patients seek credibility/endorsement from their OBs regarding cord blood options Patients desire more information to understand the need OBs can answer questions/support patient’s decision

The NATIONAL MARROW DONOR PROGRAM ® operates the Be The Match Registry ®. 4 Cord blood options Public donation –No cost to donor –Added to Be The Match Registry ® if requirements are met –Used for any child or adult in need Family banking –Storage/processing fee –Cord blood stored for family’s personal use Sibling directed –Offered at little or no cost to eligible families –Available to families with a sibling (in some cases a parent) with medical need –Stored for family’s personal use Do nothing –Discarded as medical waste

The NATIONAL MARROW DONOR PROGRAM ® operates the Be The Match Registry ®. 5 Why cord blood? Cord blood is a transplant option for: –Patients with uncommon HLA types, including many of African American ancestry –Any patient who has difficulty finding a matching adult marrow donor (only 30% of patients have a match within their family) –Patients who have an immediate need for a transplant

The NATIONAL MARROW DONOR PROGRAM ® operates the Be The Match Registry ®. 6 Why cord blood? HLA mismatch is better tolerated: –Leads to better chance of finding suitable match –Cord blood cells are more easily accepted by patients –Fewer post-transplant immune complications (graft vs. host disease)

The NATIONAL MARROW DONOR PROGRAM ® operates the Be The Match Registry ®. 7 Clinical use Cord blood is often the best – or only – hope of a cure for many patients with leukemia, lymphoma and other life- threatening diseases Cord blood is used in 33% of pediatric patients; 11% of adult patients

The NATIONAL MARROW DONOR PROGRAM ® operates the Be The Match Registry ®. 8 Diversity of cord blood units Minority includes cord blood donors who identified their race or ethnicity as: American Indian or Alaska Native Asian Black or African American Hispanic or Latino Native Hawaiian or Other Pacific Islander Source: National Marrow Donor Program/Be The Match FY 2014

Cord blood transplants by patient race The NATIONAL MARROW DONOR PROGRAM ® operates the Be The Match Registry ®. 9

10 Diseases treated More than 70 diseases can be treated by cord blood transplant Blood disordersMalignanciesMetabolic disorders Sickle-cell anemia Aplastic anemia Fanconi’s anemia Thalassemia Thrombocytopenia Diamond-Blackfan Amegakaryocytosis Leukemias Lymphomas Multiple myeloma Hodgkin’s Disease Retinoblastoma Histiocyotsis Solid tumors Hurler’s syndrome Niemann-Pick disease Krabbe disease Leukodystrophy Gaucher Disease Hunter Syndrome ImmunodeficienciesAutoimmune DiseasesOther Inherited Disorders SCID Ataxia Telangiectasia Wiskott Aldrich DiGeorge Kostmann Omenn Multiple sclerosis Systemic Lupus Rheumatoid arthritis Evan Syndrome Crohn’s Disease Osteoporosis Osteogenesis Imperfecta Lesh-Nyhan Sundrome Tay-Sachs

The NATIONAL MARROW DONOR PROGRAM ® operates the Be The Match Registry ®. 11 Common questions Patients often ask about these topics: –Cord blood does not contain embryonic stem cells –Cord blood is rich in blood-forming cells –Patients have options –Donation is completely safe for mother and baby –Donation is not available everywhere –Cord blood stored in family bank cannot be transferred to public bank at this time –Not all donated units are stored –If unit is placed on registry, no transplant information is shared (donor and recipient never meet)

The NATIONAL MARROW DONOR PROGRAM ® operates the Be The Match Registry ®. 12 Cord blood collection High-quality cord blood units are crucial Follow best practices to ensure: –As much cord blood as possible is collected –No contamination –Accurate, complete labeling

The NATIONAL MARROW DONOR PROGRAM ® operates the Be The Match Registry ®. 13 Cord blood collection Best practices include: –Clamp cord as close to baby as possible –Disinfect venipuncture site thoroughly to avoid contamination –Use smallest sample necessary for hospital testing –Minimize manipulation of cord and placenta –Collect as much cord blood as possible –Allow enough time for cord to blanch

The NATIONAL MARROW DONOR PROGRAM ® operates the Be The Match Registry ®. 14 Advances in cord blood Cord blood research is exploring: –Additional diseases, conditions that may be treated by cord blood transplant such as cerebral palsy and autism –Methods for ex vivo expansion of cord blood units prior to infusion

The NATIONAL MARROW DONOR PROGRAM ® operates the Be The Match Registry ®. 15 Cord blood resources Learn more: –BeTheMatchClinical.org/OB –Parents Guide to Cord Blood: parentsguidecordblood.org –American Academy of Pediatrics policy statement: Cord Blood Banking for Potential Future TransplantationCord Blood Banking for Potential Future Transplantation –American College of Obstetricians and Gynecologists: Committee Opinion on Umbilical Cord Blood BankingCommittee Opinion on Umbilical Cord Blood Banking –Contemporary OB/GYN, July 2012: Obstetricians’ role critical in increasing patients’ access to cord blood –Contemporary OB/GYN, Modern Medicine, June, 2014: ult/files/images/ContemporayOBGYN/SMFM-delayed-cord- clamping.pdfhttp://contemporaryobgyn.modernmedicine.com/sites/defa ult/files/images/ContemporayOBGYN/SMFM-delayed-cord- clamping.pdf

The NATIONAL MARROW DONOR PROGRAM ® operates the Be The Match Registry ®. 16 Cord blood resources Resources, continued: –American Medical Association: ethical guidelines for physicians about cord bloodethical guidelines for physicians –American Society for Blood and Marrow Transplantation: position statement and committee report on cord blood collection and preservation position statement and committee report –Health Resources and Services Administration (HRSA), U.S. Department of Health and Human ServicesHealth Resources and Services Administration (HRSA), –Transfusion, Volume 52, Issue 4, April 2012, pages : Awareness and Acceptance of Public Cord Banking Among Practicing Obstetricians in the United States.