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New Approaches for Transplant Patients Linda J Burns, MD Medical Director, Health Services Research Program National Marrow Donor Program (NMDP)/Be the Match May 21, 2016 Leukemia Research Foundation 1 Learn About • • • • • • Be The Match Types of transplants When to consider an unrelated donor transplant Finding an unrelated donor How Be The Match can assist you A look to the future 2 Be The Match: Dedicated to Patients Be The Match: People Helping People 4 Types of Transplants and Cell Sources • There are two types of transplant – autologous and allogeneic • There are three sources of stem cells for transplantation: bone marrow, peripheral blood stem cells (PBSC), and cord blood Operated by the National Marrow Donor Program®. 7 Total Number of Transplants Pasquini MC, Zhu X. Current uses and outcomes of hematopoietic stem cell transplantation: CIBMTR Summary Slides, 2015. Reasons for Transplant Pasquini MC, Zhu X. Current uses and outcomes of hematopoietic stem cell transplantation: CIBMTR Summary Slides, 2015. The Transplant Process Operated by the National Marrow Donor Program®. 15 Reduced-intensity Regimen (non-myeloablative or “mini”) • Lower doses of chemotherapy with or without radiation – Main goal: suppressing the recipient immune system to allow donor cells to engraft • Works for patients with: – Slower growing diseases – Who are less likely to tolerate the side effects of a high dose transplant • Primary benefit of this type of transplant is the immune effect: Graft vs. Leukemia/Lymphoma Operated by the National Marrow Donor Program®. 18 Standard-intensity Regimen (myeloablative) • Higher doses of radiation/chemotherapy administered with goal of killing ALL of the patient’s stem cells and diseased cells • Works for patients with: – More aggressive diseases – Who are younger and overall healthy • Usually causes more side effects Operated by the National Marrow Donor Program®. 17 Allogeneic Transplant • Family donor • Unrelated donor 13 When to Consider an Unrelated Donor Transplant • When you need an allogeneic transplant and a family member is not able to donate for you • Outcomes comparable to family donor for many diseases – Advances in HLA typing to identify the “best” match – New preparative regimens – Improved supportive care 14 How an Unrelated Donor or Cord Blood Unit Is Found • Your transplant center is responsible for searching for a donor or cord blood unit(s) • Be The Match Registry – Includes 12.5 million donors and 209,000 cord blood units – Has access to 25 million potential donors and more than 622,000 cord blood units on U.S. and global registries Operated by the National Marrow Donor Program®. 12 HLA: Genetic Identity • Human Leukocyte Antigens (HLA) are proteins found on the surface of most cells in the body • The immune system uses HLA to verify that a given cell is part of the body and not foreign • Finding a suitably-matched donor is important to reduce the risk of post-transplant complications • There are many different variations of the HLA molecules (HLA-A, -B, -C, -DRB1, -DQ, -DP) Operated by the National Marrow Donor Program®. 8 HLA Haplotypes • Possible sets of HLA combinations, termed “haplotypes,” are in the billions – Similar to a set of lottery numbers – Everyone gets one haplotype from each parent • Haplotypes often follow ethnicity (but not always) Operated by the National Marrow Donor Program®. 9 Diversity of Be The Match Registry DIVERSITY OF OUR ADULT DONORS White Minority Unknown, Other or Declined 0% White Minority Unknown, Other or Declined Other0% 10% Other 13% Minority 27% DIVERSITY OF CORD BLOOD UNITS White 60% Operated by the National Marrow Donor Program®. White 45% Minority 45% 13 NMDP: How We Can Assist You • Confidential one-on-one support and navigation • Tailored educational materials • Financial resources • Fundraising information • Insurance appeals • Peer-to-peer connection • Caregiver support Operated by the National Marrow Donor Program®. 24 Pre-Transplant Patient Materials • Booklets: – Transplant Basics – Allogeneic Transplant: How to plan and what to expect • Fact sheets: – Basics of Blood or Marrow Transplant – Allogeneic Transplant Process – Autologous Transplant Process – Preparing for Transplant – Being a Transplant Caregiver • Videos: – Basics of Blood and Marrow Transplant Post-Transplant Patient Materials • Fact sheets on chronic GVHD – Eyes, lungs, mouth, skin & connective tissues – Available summer 2016: GI tract, genitals – Developed with experts from the Chronic GVHD Consortium • Living Now newsletter series – Magazine series with 6 issues plus special caregiver issue – Mailed automatically to patients who receive an NMDP facilitated transplant – Available to order for others Post-Transplant Guidelines • Mobile app –Customizable 6-month, 12-month and 2+ year checkup guidelines –Chronic GVHD symptom checker –Set reminders (appointments, medications, etc.) –Search “transplant guidelines” in app stores to download • Also available online and print at BeTheMatch.org/patient-after Operated by the National Marrow Donor Program ®. 22 Free Webcasts for Patients and Families • Living Now: – Taking Care of Yourself – Your Role in Managing Your Chronic GvHD – Staying Healthy After Transplant – Your Journey Ahead – Making Meaning and Moving Forward Visit: BeTheMatch.org/careguide 23 Look to the Future Research will enable: • Every patient who needs a transplant to receive one when they need it • More patients to be cured of their disease • Us to understand and improve outcomes that matter most to patients 24 Take Home Points • Be The Match helps transplant centers identify unrelated stem cells (donor or umbilical blood) for their patients in need of a transplant • Survival following an unrelated transplant is similar to a transplant using a family member as a donor • Be The Match has many programs to help you and your family through the transplant journey • The future is bright for patients needing a transplant 25