1. Shannon N. Barringer, MS Certified Genetic Counselor UAMS Department of OB/GYN ANGELS Program Who Should Bank Their Baby’s Cord Blood?

2. The Basics Removal of ~50cc of placental cord blood Removal of ~50cc of placental cord blood Contain hematopoietic progenitor cells Contain hematopoietic progenitor cells Sent to storage facility for freezing until transplant (or forever?) Sent to storage facility for freezing until transplant (or forever?) Parental choice???? Parental choice???? Arrangements typically must be made by 34 weeks GA. Arrangements typically must be made by 34 weeks GA.

3. History of Cord Blood Transplantation First transplantation performed in 1970 on 16 yr. old with ALL. First transplantation performed in 1970 on 16 yr. old with ALL. Confirmation of presence of progenitor cells in cord blood in 1982. Confirmation of presence of progenitor cells in cord blood in 1982. First collection and banking project in 1984 at Indiana University Medical Center. First collection and banking project in 1984 at Indiana University Medical Center. “Curing” of genetic condition by cord blood transplantation in Paris in 1988. “Curing” of genetic condition by cord blood transplantation in Paris in 1988. As of 2005, there are 33 cord blood registries (public and private) in the world. As of 2005, there are 33 cord blood registries (public and private) in the world.

4. Definitions Stem Cells: generally totipotent cells; may be embryonic (inner cell mass of embryo) or somatic (adult) in nature. Stem Cells: generally totipotent cells; may be embryonic (inner cell mass of embryo) or somatic (adult) in nature. Progenitor Cells: “ancestor” cells---can produce further cells/tissues of a particular type. Some refer to these as somatic/adult stem cells. Progenitor Cells: “ancestor” cells---can produce further cells/tissues of a particular type. Some refer to these as somatic/adult stem cells. Allogenic v. Autologous: donation of cells/tissue to another human v. self- donation. Allogenic v. Autologous: donation of cells/tissue to another human v. self- donation.

6. How Does It Work? Different methods of collection Different methods of collection –“Blood Bag Gravity” –Syringe (UAMS) –In utero vs. ex utero –Never in complicated deliveries http://www.cord-blood- video.com/

7. Shipping and Storing Companies send collection/mailing kits Companies send collection/mailing kits Public Banks test for HIV, CMV, hepatitis… Public Banks test for HIV, CMV, hepatitis… HLA antigen testing HLA antigen testing Cryopreservation in liquid phase, liquid N. Cryopreservation in liquid phase, liquid N. Standardization of safety, testing, and storage limitations? Standardization of safety, testing, and storage limitations? How long can you store blood? How long can you store blood?

8. Transplantation Investigational Investigational Acute and chronic GVHD is < BMT as # and reactivity of lymphocytes is lower. Acute and chronic GVHD is < BMT as # and reactivity of lymphocytes is lower. “Recovery” is longer than with BMT. “Recovery” is longer than with BMT. Overall survival appears similar. Overall survival appears similar.

9. Autologous versus Allogenic Indications for autologous transplantation are quite limited (i.e. some leukemias, neuroblastomas) Indications for autologous transplantation are quite limited (i.e. some leukemias, neuroblastomas) Directed donation to sibling/parent, especially if no other HLA identical sibling or well-matched unrelated adult BM. Works better on younger children. Directed donation to sibling/parent, especially if no other HLA identical sibling or well-matched unrelated adult BM. Works better on younger children. Altruistic donation for banking and allogenic transplantation can be considered. Altruistic donation for banking and allogenic transplantation can be considered.

10. American Academy of Pediatrics, Working Group on Cord Blood Banking, 1999.

11. Potential Uses for Cord Blood Treatment of leukemias (ALL, CML) Treatment of leukemias (ALL, CML) Sickle Cell Anemia Sickle Cell Anemia Thalassemias Thalassemias SCIDs SCIDs Non-Hodgkin’s Lymphoma Non-Hodgkin’s Lymphoma Aplastic Anemia Aplastic Anemia Blackfan-Diamond Anemia Blackfan-Diamond Anemia Gaucher Disease Gaucher Disease Hunter/Hurler syndrome Hunter/Hurler syndrome Neuroblastoma Neuroblastoma Some solid tumors Some solid tumors Fanconi Anemia Fanconi Anemia Congenital Cytopenia Congenital Cytopenia Osteopetrosis Osteopetrosis

12. Bigger Debate: What About Those Private Banks? 22 Private Banks 22 Private Banks Costs include: Costs include: –One-time collection fees (range from $850 to $1980) –Courier fees –Yearly storage fees (range from $55-$115) –Testing and accreditation standards not uniform. HLA typing is extra.

13. Bigger Debate: What About Those Private Banks? Odds you would need cord blood for child that donated blood is between 1/1000 to 1/120,000 Odds you would need cord blood for child that donated blood is between 1/1000 to 1/120,000 If you do, however, blood is readily available, not so in public banks. If you do, however, blood is readily available, not so in public banks. Coercive methods??? Coercive methods???

14. What About Public Banks? Storing/collection costs $, so public banks rely on grants, federal funding, donations. Storing/collection costs $, so public banks rely on grants, federal funding, donations. Primarily for research use and philanthropic donation (allogenic) Primarily for research use and philanthropic donation (allogenic) National Marrow Donation Program (NMDP) maintains participating hospital lists National Marrow Donation Program (NMDP) maintains participating hospital lists Cryobanks Int’l will accept blood from anywhere in US Cryobanks Int’l will accept blood from anywhere in US

15. American Academy of Pediatrics Consider procedure of banking and transplanting investigational. Consider procedure of banking and transplanting investigational. Don’t consider autologous transplant as likely or efficacious (do not refer to as “biological insurance) Don’t consider autologous transplant as likely or efficacious (do not refer to as “biological insurance) Philanthropic donation at no cost should be encouraged, with proper informed consent Philanthropic donation at no cost should be encouraged, with proper informed consent Recruitment practices need to be aware of “emotional vulnerability” of pregnant women/families Recruitment practices need to be aware of “emotional vulnerability” of pregnant women/families Accurate information on risks/benefits be given by medical personnel Accurate information on risks/benefits be given by medical personnel Do not do during complicated deliveries Do not do during complicated deliveries Need federal guidelines from FTC, USDA. Need federal guidelines from FTC, USDA.

16. American College of OB/GYN Many unanswered questions about cord blood banking still exist Many unanswered questions about cord blood banking still exist Odds of needing stem cell transplant are considered low. Odds of needing stem cell transplant are considered low. Cord Blood Banks should not be coercive—sell to parent as “doing everything possible for your baby.” Cord Blood Banks should not be coercive—sell to parent as “doing everything possible for your baby.”

17. National Society of Genetic Counselors Donation should be voluntary. Donation should be voluntary. Every effort should be made to increase public and professional knowledge about public and private cord blood banking processes. Every effort should be made to increase public and professional knowledge about public and private cord blood banking processes. Informed consent is key Informed consent is key

18. Who Would Benefit? Families who have current member who needs/may need stem/progenitor cell transplant. Families who have current member who needs/may need stem/progenitor cell transplant. This includes severe hemoglobinopathies or leukemias may indicate need for directed-allogenic cord blood banking and transplantation. This includes severe hemoglobinopathies or leukemias may indicate need for directed-allogenic cord blood banking and transplantation. Philanthropic donations Philanthropic donations