Pulse
The Matchmaker
Headquartered in Minneapolis, the National Marrow Donor Program has become the world’s resource for patients needing a marrow, cord blood, or peripheral blood transplant.
By Kim Kiser
In a single-story warehouse in New Brighton, the 14 employees of the National Marrow Donor Program’s (NMDP) repository are getting ready for the morning FedEx delivery. More than a dozen tubs will arrive, each containing envelopes that hold cotton swabs with cells from the lining of the cheeks of potential bone marrow donors that will need to be catalogued, tissue-typed, and stored. Those cells, along with blood samples, are the blocks on which the program’s donor registry is built—bits of tissue that have lifesaving potential for people with more than 70
The Repository
The National Marrow Donor Program has been collecting and storing samples of blood and tissue since 1987. Today, those samples are housed in a 35,000-square-foot warehouse in New Brighton that’s equipped with floor-to-ceiling storage bins for buccal swab and filter-paper samples of tissue, a walk-in freezer where the temperature is held at -20F for storing blood samples, 30 upright industrial freezers that reach -80C, and 20 cryogenic liquid nitrogen tanks that reach -180C for storing research samples.
Here’s a snapshot of the facility:
- Total samples stored: 10 million-plus
- Number of samples received each month: 37,000
- Number of sample sets added each year: 400,000-plus
- Donor/recipient pairs whose blood samples are stored for research: 22,000
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blood and metabolic disorders.
Since the registry began matching donors and recipients in 1987, the number of samples stored at the repository has grown to more than 10 million (see “The Repository”). Leila Jones, Ph.D., who manages the repository, says they will store the samples until they are no longer good for tissue typing. “We haven’t found that endpoint yet,” she says.
In many ways, the repository’s growth is a reflection of the way science has changed blood and marrow transplantation. “We’re not just about marrow, we’re about peripheral blood stem cells, marrow, and cord blood, and at $325 million in annual revenue and 720 employees, we’re not just a program anymore,” says CEO Jeff Chell, M.D. “We’re not national anymore, we’re international.”
Last year alone, the NMDP facilitated 5,200 blood and marrow transplants (about half involved donors or recipients from outside the United States)—more than three times the number performed in 2000, the year Chell became head of the organization. And when Chell peels off those statistics, his enthusiasm for his work come through loud and clear. So does the reason for it: “We can all trace what we do to saving lives.”
A Broader Approach
Before Chell joined the NMDP, which is headquartered in northeast Minneapolis just a few miles from the repository, the organization’s primary function was collecting names and samples from potential marrow donors. That had been the organization’s mission since the 1980s, when marrow transplantation from unrelated donors became a viable treatment for blood diseases such as chronic myeloid leukemia and lymphoma.
When Chell, an internal medicine physician who had run the clinic division of Allina Health System and worked with cancer patients in his practice, took the helm, his first task was to identify what else the organization could do. “Rather than thinking of ourselves as a donor registry, we needed to think of ourselves as an advocate for patients, helping our transplant centers any way we could
Birth of a Registry
In the early 1980s, when transplantation using unrelated donors became feasible, families of patients began creating their own informal registries of family members, friends, and acquaintances in order to find a match. Soon, those families began combining their lists.
Working with representatives from Red Cross agencies, which were tissue-typing platelet donors, and doctors from the University of Minnesota, Memorial Sloan-Kettering Cancer Center, the Fred Hutchison Cancer Research Center, and other institutions that were treating leukemia and lymphoma patients, and with $2 million from the federal government, they built a national registry in 1987. They located it in Minneapolis after the University of Minnesota and St. Paul Red Cross agreed to provide staffing, space, and computer systems. The National Marrow Donor Program now operates independently.
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to provide better care for patients,” he explains, adding that the program currently works with 169 transplant centers in the United States as well as centers in 12 other countries. In addition to maintaining the registry, the NMDP conducts research and provides education and services for patients and physicians (see “Five Things Doctors Should Know about Blood and Marrow Transplantation”).
Thinking differently is only part of the explanation for the organization’s growth and evolution, however. At first, chronic myeloid leukemia was the reason for most marrow transplants. By the mid-1990s, research was showing that transplantation held potential for other diseases such as acute myelogenous leukemia and myelodysplastic syndrome. “We didn’t understand how many patients could really benefit from transplant,” Chell admits.
In the late 1990s, two developments opened up transplantation as a possibility for older patients. One was the introduction of reduced- intensity conditioning, in which patients receive lower doses of chemotherapy and radiation prior to transplant—the idea being that it reduces the patient’s chance of becoming ill or dying from the pretreatment. The second was the introduction of peripheral blood stem cells. Using stem cells collected from the peripheral blood stream rather than from marrow allows for more rapid blood count recovery and outcomes similar to those of marrow recipients; it also promotes faster engraftment or production of new cells. “The combination of using reduced-intensity conditioning plus this new form of therapy—peripheral blood stem cells—allowed us to expand the patient population to people well beyond age 50, to people who were sicker, and to more fragile patients,” Chell says.
New Challenges
With the ability to treat new patients and diseases came the need for more sources of blood and marrow. In addition to rebranding the registry as the Be the Match Registry in 2009, Chell has increased the number of recruiters, who talk to people about the idea of saving a life rather than simply joining a registry. “We started setting goals of growing by 10 or 20 percent a year, and the network responded to those goals,” he says.
Five Things Doctors Should Know about Blood and Marrow Transplantation
- It’s effective for more than 70 medical conditions, says Jeff Chell, M.D., CEO of the National Marrow Donor Program in Minneapolis.
- Cells are available. “We can find an adult or cord-blood match for the vast majority of Americans,” he says. In 2006, more than one-third of allogeneic transplants performed used cells from unrelated donors.
- Transplantation isn’t the treatment of last resort. “Early referral is important,” Chell says. “Outcomes are best when people are treated early in their disease.”
- There is no age limit for transplantation. “We’ve transplanted people from 0 days to 82 years of age,” he says.
- There is an optimal time for transplantation. Although it differs according to disease, it’s usually during the first remission, Chell says. Guidelines are available at www.marrow.org/md-guidelines in the Physicians’ Resource Center. Apps are available for the iPhone, Android, Blackberry, and iPad.
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Perhaps the biggest boost to donor recruitment was the development of buccal swab testing, which allows potential donors to simply wipe the inside of their cheek to obtain squamous cells that can be precisely tissue-typed. Potential donors can register online, have a buccal swab testing kit sent to them, swab their mouth, and send the sample back. No blood draw required until a potential match is identified.
Another breakthrough that significantly affected the supply of available cells—and the work of the NMDP—was the ability to use cord blood. Cord blood banks had been working independently, so looking for a potential match involved contacting each individual bank. “Transplant coordinators were saying it took all their time to find the best match,” Chell says. So in 2005, the organization became the national coordinating center for cord blood, adding information about cord blood units from 26 banks around the world to the registry. “We did maybe zero cord blood transplants in 1999. This year, we’ll do 1,200—and that will account for more than 20 percent of all of the transplants we facilitate,” he says.
According to Chell, the NMDP’s next priority will be to enhance the organization’s IT systems. With each additional partnership or service—adding peripheral stem cells and cord blood to the registry and working with new international transplant centers and registries—has come more data and more paperwork (it’s not uncommon, he says, to receive 60-page faxes from international partners looking for a matching donor). Chell says they would like to build a system that would allow transplant centers anywhere in the
world to call up information about potential donors online. He explains that having such access will become critical as more uses are found for marrow, peripheral stem cells, and cord blood and as more patients become eligible for transplantation.
“We are preparing ourselves for a future in which the number of transplants may go up at least threefold or greater,” he says. “We want to build a system that could manage up to 100,000 transplants a year, and I believe we have the resources to accomplish what we need to accomplish.”