A promise made A promise kept Report to the community 2009 NMDP has facilitated more than 40,000 marrow and cord blood transplants since 1987 • The NMDP facilitated mor han 4,800 marrow and cord blood transplants in 2009, an average of more than 400 transplants • NMDP has facilitate more than 40,000 marrow and cord blood transplants since 1987 • The NMDP facilitated more than 4,800 marrow an ord blood transplants in 2009, an average of more than 400 transplants each month—almost twice as many transplan s it did five years ago. • Be The Match Registry is world’s largest and most diverse registry of volunteer marrow dono nd donated cord blood units. • A single point of access to more than 8 million potential donors and 160,000 More tha 75,000 new potential donors joined in 2009. • 48,000 new potential donors join each month. • Another 5 million dono nd 240,000 cord blood units available through relationships with international and cooperative registries. • In 2009, mor han $5 million made available to qualifying patients • In 2009, more than 1,800 requests approved for patient assistanc NMDP’s Center for Cord Blood is a leader in cord blood banking with 27 public cord blood banks. • The NMDP’s networ f public cord blood banks recruited more than 18,000 cord blood units in 2009. • In 2009, the NMDP provided mor han 1,000 cord blood units for transplant, an increase of more than 11 percent over 2008 • Umbilical cord blood expand ccess to transplant therapy for minority patients from racially and ethnically diverse communities • In 2009, 42 percent o ansplant patients from racially and ethnically diverse communities received a cord blood transplant • In 2009, the CIBMT ublished 48 articles in peer-reviewed journals and 32 abstracts, and has 12 clinical studies and 248 observational studie progress • NMDP’s Office of Patient Advocacy responded to more than 12,400 patient and family inquiries. • Cuttin dge research that has led to increased survival and an enriched quality of life for thousands of patients worldwide. • 009, the NMDP facilitated nearly 1,900 transplants for patients age 50 and older. That’s a 22 percent increase over 200 nd represents 39 percent of all NMDP transplants for 2009. • In 2009, 75 percent of adult donors—more than 2,800— rovided a peripheral blood stem cell donation • The NMDP facilitated more than 1,000 umbilical cord blood transplan 2009 • NMDP maintains relationships with donor centers, transplant centers, cord blood banks, and registries in mor han 35 countries. • 51 percent of transplants facilitated by the NMDP involve either an international donor or recipien ansplants each month—almost twice as many transplants as it did five years ago. • Be The Match Registry is world rgest and most diverse registry of volunteer marrow donors and donated cord blood units. • A single point of access t more than 8 million potential donors and 160,000 More than 575,000 new potential donors joined in 2009. • 48,000 ne otential donors join each month. • cord blood units accessed through Be The Match Registry • Another 5 million dono nd 240,000 cord blood units available through relationships with international and cooperative registries. • In 2009, mor
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National Marrow Donor Program Report to the Community
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A promise madeA promise kept
Report to the community 2009
• NMDP has facilitated more than 40,000 marrow and cord blood transplants since 1987 • The NMDP facilitated more than 4,800 marrow and cord blood transplants in 2009, an average of more than 400 transplants • NMDP has facilitated more than 40,000 marrow and cord blood transplants since 1987 • The NMDP facilitated more than 4,800 marrow and cord blood transplants in 2009, an average of more than 400 transplants each month—almost twice as many transplants as it did five years ago. • Be The Match Registry is world’s largest and most diverse registry of volunteer marrow donors and donated cord blood units. • A single point of access to more than 8 million potential donors and 160,000 More than 575,000 new potential donors joined in 2009. • 48,000 new potential donors join each month. • Another 5 million donors and 240,000 cord blood units available through relationships with international and cooperative registries. • In 2009, more than $5 million made available to qualifying patients • In 2009, more than 1,800 requests approved for patient assistance • NMDP’s Center for Cord Blood is a leader in cord blood banking with 27 public cord blood banks. • The NMDP’s network of public cord blood banks recruited more than 18,000 cord blood units in 2009. • In 2009, the NMDP provided more than 1,000 cord blood units for transplant, an increase of more than 11 percent over 2008 • Umbilical cord blood expands access to transplant therapy for minority patients from racially and ethnically diverse communities • In 2009, 42 percent of transplant patients from racially and ethnically diverse communities received a cord blood transplant • In 2009, the CIBMTR published 48 articles in peer-reviewed journals and 32 abstracts, and has 12 clinical studies and 248 observational studies in progress • NMDP’s Office of Patient Advocacy responded to more than 12,400 patient and family inquiries. • Cutting-edge research that has led to increased survival and an enriched quality of life for thousands of patients worldwide. • In 2009, the NMDP facilitated nearly 1,900 transplants for patients age 50 and older. That’s a 22 percent increase over 2008 and represents 39 percent of all NMDP transplants for 2009. • In 2009, 75 percent of adult donors—more than 2,800—provided a peripheral blood stem cell donation • The NMDP facilitated more than 1,000 umbilical cord blood transplants in 2009 • NMDP maintains relationships with donor centers, transplant centers, cord blood banks, and registries in more than 35 countries. • 51 percent of transplants facilitated by the NMDP involve either an international donor or recipient transplants each month—almost twice as many transplants as it did five years ago. • Be The Match Registry is world’s largest and most diverse registry of volunteer marrow donors and donated cord blood units. • A single point of access to more than 8 million potential donors and 160,000 More than 575,000 new potential donors joined in 2009. • 48,000 new potential donors join each month. • cord blood units accessed through Be The Match Registry • Another 5 million donors and 240,000 cord blood units available through relationships with international and cooperative registries. • In 2009, more
Jeffrey W. Chell, M.D., Chief Executive Officer with Edward L. Snyder, M.D., Chairman of the Board
NMDP Report to the Community 2009 | 3NMDP Report to the Community 2009 | 3
A Promise Made.A Promise Kept.
Families and physicians who founded the National Marrow Donor Program® made a promise to help every patient in need.
Twenty-three years ago, our founders made a commitment to: n Increase access to transplant
n Find people willing to donate
n Support research to extend and improve lives
Today, thanks to every person who shares our commitment to patients, we are fulfilling that promise. We are facilitating unrelated transplants around the globe. We are recruiting potential donors in record numbers. We are improving transplant outcomes through continual medical advances.
This report to the community highlights our past year’s activities and shares our vision for the future. On behalf of all patients and their families, thank you for helping save lives.
Jeffrey W. Chell, M.D., Chief Executive Officer Edward L. Snyder, M.D., Chairman of the Board
2-year-old Autumn, transplant recipient, with Shalini Shenoy, M.D., her transplant physician
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Our Promise to Physicians
We will help you give your patients a second chance at life.
n We offer a single point of access to more than 13 MiLLiOn DOnOrS and 400,000 COrD bLOOD unitS worldwide.
n We provide HLA-MAtCHing ExPErtiSE to help select the best donor or cord blood unit.
n We provide OngOing EDuCAtiOn on advances in transplant, the importance of timing and best practices in post-transplant care.
n Together with our research program, CIBMTR® (Center for International Blood and Marrow Transplant Research), we shared the results of cutting-edge research through a total of 70 PEEr-rEviEWED JOurnAL ArtiCLES and 61 AbStrACtS presented at professional conferences in 2009.
In 2009, 12 clinical trials were open to accrual, 13 trials were in development and 248 observational studies were in progress.
These included the Peripheral Blood Stem Cell (PBSC) vs. Marrow Clinical Trial, which completed enrollment with 550 matched donor/recipient pairs. The study will help guide the choice of cell source to use for transplant.
This research and other advances are resulting in improved survival over the past five years. One-year survival for unrelated transplant recipients has increased by 12 percent and outcomes are now comparable to related donor transplants.
To learn more visit marrow.org/md
Improved 1-Year Survival After Bone Marrow Transplant
Two-time marrow donor, Guy (left) donated to Mark (right), whom he met for the first time at the 2009 Council Meeting
NMDP Report to the Community 2009 | 9NMDP Report to the Community 2009 | 9
Our Promise to the Community
We will provide you the opportunity to save a life.
n Through bE tHE MAtCH®, we work with patient families, faith communities, corporations, colleges and universities, and other organizations to recruit people who want to support our life-saving mission.
n In 2009, we rECruitED MOrE tHAn 575,000 POtEntiAL DOnOrS to the Be The Match Registry® and enlisted the support of new mothers who helped us add more than 18,000 COrD bLOOD unitS.
n 42 PErCEnt of new potential donors were rACiALLy AnD EtHniCALLy DivErSE, which improves all patients’ chances of finding a genetically matched donor.
Even though there are more than 8 million donors and 160,000 cord blood units available through the Be The Match Registry, there is StiLL A nEED fOr MOrE. Some tissue types are uncommon or rare. And because tissue type is inherited, patients are most likely to match donors who share their heritage.
To help all patients find a suitable donor, Be The Match was specifically designed to engage young, healthy, motivated and diverse individuals. As demonstrated by record recruitment, Be The Match is succeeding in capturing people’s attention and motivating them to join the registry, provide financial support and volunteer.
Holly Comer and Becky Wasilewski, transplant coordinators at Barnes-Jewish Hospital, St. Louis, Missouri
NMDP Report to the Community 2009 | 11NMDP Report to the Community 2009 | 11
Our Promise to Network Partners
We will work together with you to meet the needs of our global transplant community.
n We collaborate with 527 nEtWOrk PArtnErS, including the world’s leading transplant centers, research centers, recruitment groups, donor centers, collection centers, cord blood banks and cooperative registries.
n WE PrOviDE tHE tOOLS AnD SErviCES essential to efficient network operation—from donor recruitment materials to interactive technology used to identify the best transplant options for patients around the world.
n In 2009, 51 PErCEnt Of ALL trAnSPLAntS we facilitated involved either an international donor or recipient.
To learn more visit marrow.org
Our interactive technologies help network partners cut through the complexity of HLA matching and manage the search process by providing state-of-the-art systems that allow physicians to perform world-wide searches, search multiple cord blood units for a single patient, request HLA typing, and manage the progress of donors and cord blood units throughout the process.
Transplant centers use our enhanced search algorithm, HaplogicSM, to find the best matched donor or cord blood unit efficiently. Based on analyses of millions of potential donors on the Be The Match Registry, Haplogic uses mathematical models and advanced logic to predict a donor or cord blood unit’s high-resolution match.
As demand for transplant services grows, we continue to expand and refine our services to better serve all patients, donors and network partners today and in the future.
Stephanie Sarantopoulos, M.D., Ph.D., the 2009 awardee in the Amy Strelzer Manasevit Scholars Program
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Our Promise toContributors
We will exercise good stewardship over the funds you entrust to us.
The NMDP is a nonprofit organization that recovers most of its operating costs through fees for service. We receive additional support from a combination of public, private and other nonprofit funding sources.
n The NMDP’s fundraising partner, Be The Match FoundationSM, rAiSED $15.1 MiLLiOn in 2009.
n Over the past five years, NMDP has reinvested more than $63 MiLLiOn dollars back into the transplant community.
n These funds have been essential to our efforts to increase public support, grow and diversify the registry, build public cord blood banking and develop the infrastructure needed to meet future demand.
To learn more visit betheMatchfoundation.org
Be The Match Foundation is expanding its reach to help more patients. Corporate partnerships are on the rise, new efforts have been launched to engage donors about to age-off the registry, and a new planned giving campaign has been developed to help contributors secure a legacy of hope.
One-hundred percent of your donations to the foundation go directly to providing patient assistance funds, growing the registry and improving patient quality of life through scientific and medical research.
NMDP also receives federal funding from 14 government programs, including: The Health Resources and Services Administration, The Office of Naval Medical Research, Public Health Service, Centers for Disease Control and Prevention, and National Institutes for Health.
Risa, mother and caregiver with her son Ajani, transplant recipient
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Our Promise for the future
We will strive to provide the greatest possible benefit to every patient in need of a transplant.n We will continue to improve transplant
outcomes through medical advances, focusing on new treatments to help more people live longer and healthier lives.
n We will continue to grow the Be The Match Registry, improving every patient’s opportunity to find the optimal donor or cord blood unit.
n We will continue to improve access to treatment for more patients by reducing barriers to transplant.
n We will continue to raise the funds needed to advance our mission.
We will deliver the innovative solutions that will transform our business as needed to SuCCESSfuLLy SErvE 10,000 PAtiEntS PEr yEAr by 2015. Just as the number of transplants we facilitated doubled from 2004 to 2009, it will double again in the next five years.
To achieve this goal, we will launch new tools to streamline every aspect of the process. We will accelerate search, improve donor availability, and provide services that allow transplant centers to focus on patient care.
In short, we will continue to champion the NMDP’s mission as promised by our founders: To create an opportunity for all patients to receive the marrow or cord blood therapy they need, when they need it.
Thank you for all you do to make this vision a reality.
• The NMDP facilitated more than 4,800 marrow and cord blood transplants in 2009, an average of more than 400 transplants each month—almost twice as many transplants as it did five years ago. • Be The Match Registry is world’s largest and most diverse registry of volunteer marrow donors and donated cord blood units. • A single point of access to more than 8 million potential donors and 160,000 More than 575,000 new potential donors joined in 2009. • 48,000 new potential donors join each month. • Another 5 million donors and 240,000 cord blood units available through relationships with international and cooperative registries. • In 2009, more than $5 million made available to qualifying patients • In 2009, more than 1,800 requests approved for patient assistance • NMDP’s Center for Cord Blood is a leader in cord blood banking with 27 public cord blood banks. • The NMDP’s network of public cord blood banks recruited more than 18,000 cord blood units in 2009. • In 2009, the NMDP provided more than 1,000 cord blood units for transplant, an increase of more than 11 percent over 2008 • Umbilical cord blood expands access to transplant therapy for minority patients from racially and ethnically diverse communities • In 2009, 42 percent of transplant patients from racially and ethnically diverse communities received a cord blood transplant • In 2009, the CIBMTR published 48 articles in peer-reviewed journals and 32 abstracts, and has 12 clinical studies and 248 observational studies in progress • NMDP’s Office of Patient Advocacy responded to more than 12,400 patient and family inquiries. • Cutting-edge research that has led to increased survival and an enriched quality of life for thousands of patients worldwide. • In 2009, the NMDP facilitated nearly 1,900 transplants for patients age 50 and older. That’s a 22 percent increase over 2008 and represents 39 percent of all NMDP transplants for 2009. • In 2009, 75 percent of adult donors—more than 2,800—provided a peripheral blood stem cell donation • The NMDP facilitated more than 1,000 umbilical cord blood transplants in 2009 • NMDP maintains relationships with donor centers, transplant centers, cord blood banks, and registries in more than 35 countries. • 51 percent of transplants facilitated by the NMDP involve either an international donor or recipient transplants each month—almost twice as many transplants as it did five years ago. • Be The Match Registry is world’s largest and most diverse registry of volunteer marrow donors and donated cord blood units. • A single point of access to more than 8 million potential donors and 160,000 More than 575,000 new potential donors joined in 2009. • 48,000 new potential donors join each month. • cord blood units accessed through Be The Match Registry • Another 5 million donors and 240,000 cord blood units available through relationships with international and cooperative registries. • In 2009, more than $5 million made available to qualifying patients • In 2009, more than 1,800 requests approved for patient assistance • NMDP’s Center for Cord Blood is a leader in cord blood banking with 27 public cord blood banks. • The NMDP’s network of public cord blood banks
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To learn how you can help make life-saving transplants a reality for patients, visit marrow.org.
Entrusted to operate the C.W. Bill Young Cell Transplantation Program, including the Be The Match Registry®.