How the search for a match gets from the patient’s doctor to a donor

Posted October 5th, 2010 by Be The Match and filed in Donor Stories, Patient Stories
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If you are a member of the Be The Match Registry® and are identified as a potential donor match for a searching patient, a Be The Match® representative will contact you. But how does that search request get from the patient’s doctor to you?

The National Marrow Donor Program® (NMDP) facilitates more than 400 transplants a month, and for every one of those transplants, an NMDP search coordinator helped manage the donor search. Search coordinators — like Grace – communicate requests between transplant centers, donor centers and umbilical cord blood banks and manage a myriad of details to make sure all the pieces fall into place to make transplants happen.

“Everything I do is directly connected to a specific patient,” Grace said. “I know the challenges faced by the patients I’m helping, and that keeps me motivated.”

The process begins with the doctor
A patient’s doctor begins the search for a donor by requesting a report from the NMDP of possible matches. This report includes members of the Be The Match Registry, as well as umbilical cord blood units stored at participating public cord blood banks throughout the country. NMDP search coordinators also provide reports from international cooperative donor registries.

The next step is for a patient’s doctor to request additional testing on one or more potential donors or umbilical cord blood units. An NMDP search coordinator reviews each request and forwards it to the donor center that will contact the potential donor or to a cord blood bank.

When a donor is selected
Maintaining donors’ and patients’ privacy is very important. To keep the identity of donors and patients confidential, search coordinators manage communications between the patient’s transplant center and the donor center.

After medical testing and other preparatory meetings with the donor center to confirm the donor is eligible and willing to donate, the search coordinator usually helps schedule donation and transplant dates. The donation date must accommodate both the donor’s schedule and the patient’s treatment plan, so scheduling typically requires many phone calls or e-mails back and forth. Search coordinators often handle these communications to streamline the process.

Making transplants happen when timing is critical
On any given day, Grace may be supporting up to forty patients by facilitating their search process. She adheres to quality control checklists for every doctor’s search request to ensure they meet NMDP standards and move forward in a timely way. “When something comes in, you have to take care of it immediately,” she said.

“Like most people who work at the NMDP,” Grace said, “I like that we’re working to save patient’s lives.” When she talks to staff at the transplant center, she hears about what the patient is going through “and that makes my work much more real.”

A search coordinator’s role ends when the search process is complete. “I wish I knew what happened to the patients after that,” Grace said. “But we don’t see that side.” Once the search is complete and marrow donation scheduled, Grace and the other search coordinators move on to focus on the next patient’s search.

15 Responses to “How the search for a match gets from the patient’s doctor to a donor”

  1. DAMARIS LEBRON says:

    hace unas semanas atras me enviaron una carta donde decia que yo era un potencila donante quisiera saber en que status se encuentra esa investigacion

  2. Margaret Hurley says:

    I submitted my DNA several weeks ago and havn’t heard anything…Does that mean I wasn’t a natch after all??

  3. Angel Guffey says:

    I became a member of the donor list many years ago and have never heard anything. Do I need to do anything to stay on the donor list or is everything still up to date?

  4. sheik lopez says:

    Yo no entiendo como hay tantos niños y adultos necesitados de donaciones y nunca me han llamado 🙁 estoy en lista de donacion desde hace mas de 2 años no puedo creer que nadie necesite mi donacion.

  5. Shirley Snyder says:

    I was put on a donor list back in th 90’s – never have been contacted –

  6. Toni L. says:

    After reading some of the comments, I feel I should comment on our family’s experience so folks understand how much is involved in finding a match. Our mother was diagnosed with chronic lymphocytic leukemia in the spring. Her cancer was such that she would need a transplant if she got through the chemo okay. We first tried to find a match in the family–she had 2 sisters and 3 half-sisters. The genetic markers that need to match are so specific that only one of her sisters matched 4 of the 6 markers. The others matched fewer than four. No one else in the family had a good match–and this is family we are talking about. For a match to occur, the genetic markers must match EXACTLY–even a 90% good match is rife with risks for the recipient. The match must be perfect and to find a 100% match can be very difficult. My mom was of Western European, Native American and Asian ancestry, so this made finding a match potentially difficult. Sadly, she passed way from complications from her chemo before we could search for a match in the database. The difficulty of matching should be an encouragement for more folks to register in the database–the more folks registered, the more of a chance there will be a match for someone. I especially encourage folks from Hispanic and Asian ancestry to register as these are under-represented groups in the database. I’m registered and maybe one day can help someone else out there.

  7. Tammy Stuckey says:

    I had my blood drawn about 10 years ago to help a female that was fighting leukemia.. I was told that my blood would be on the National Registry. I have never been called. Should I do anything else?

  8. Patricia Lee says:

    To all of you who have been on the registry a long time and not been called, don’t worry. It is important that you keep your contact information up to date so that if a match does occur, they can get in touch with you quickly. As Toni L. said, there are six markers, so there are many, many combinations. It isn’t as simple as just A+ blood. Your participation in the registry is just as important because someday you may be a match. Personally, I joined the registry in the early 1990s to help someone who I did not match. My initial sample matched a second person, but the follow-up sample did not. I was a good match for a third person, but not the best match. I was the best match for the fourth person and donated marrow to him. The more people on the registry, the more matches that can be made.

  9. Vicki says:

    I saw a place that said I could have a kit sent to me to collect my DNA. I have not been able to find that site again. Can someone provide me with contact information? Thank you.

  10. Kelly says:

    There has been some feedback to the many of us who question about being on the registry for many years and never been contacted. I think it would be helpful to know- is there any statistical data the would indicate the possible % chance of ever being contacted as a potential donor.
    Thank you.

  11. Hoteles Salamanca says:

    I have found it really interesting all that we’ve put in here, the truth, I think it will serve lot of people help, I’m serious.

  12. Molly says:

    I got a call last week that the cord blood I donated when having my daughter is a match to a 43yo male with acute myelogenous leukemia. I donated almost 5 years ago. Matches do happen, and it is a great feeling to know that through my very minor decision, a life may be saved. I am also on the bone marrow registry and hope to get a call someday that there is a match there too. A good friend of mine died from adult-onset leukemia in 1996 at age 30. At that time they didn’t have the cord-blood option.

    I wonder, about the cord blood, is it used up now? Or do they just take some of it and replicate it, and keep the rest in the bank?

    Please donate!!

  13. Jerry says:

    Something I learned is the potential doner must check back with NMDP or their blood bank to ensure that all the blood marker info is in the system. If your info isn’t complete, the computer that does the searching will automatically bypass you.

    Why more attention isn’t given to this, I have no idea. Also, when we first registered, the lab work was expensive & complicated. So not all pertinent dna info was collected. Today things are simpler & cheaper so more info is collected & placed onto the database.

    Why not contact the old potential doners & update their medical info & possibly collect more blood so more info exists on database?

    Better yet, and I hope this message get through to somebody, why can’t scientists create “a la carte” a doner profile of dna to custom match a person–the same way scientists can custom build a virus or other biological things?

    Please let me know any answer.

    • admin says:

      Jerry, thank you for your patience waiting for a response to your comment. I checked in with our Scientific Services department for accurate information. You are right that the tissue typing process has evolved over time, and today, most new registry members are tissue typed at a higher resolution than in the past.

      The National Marrow Donor Program (NMDP) HAS conducted several projects to update the typing of members who joined the registry with lower resolution typing. It isn’t financially feasible to re-test all members, but members with lower resolution typing are NOT automatically bypassed. Research in population genetics and mathematics gives us a powerful tool to predict a donor’s tissue typing and the likelihood of a match to a patient. The NMDP search algorithm allows for an accurate and cost-effective way to make use of all potential donors on the registry, regardless of the resolution of their typing. Every time a patient’s doctor searches for a donor on the Be The Match Registry, an advanced algorithm provides the likelihood and potential matching of all members available on the registry.

      Research in the field of transplant continues to study ways to improve outcomes for patients, including ways to make a transplant more tolerable for patients with less matched donors. The immune system is one of the most complex biological systems which protect the body from foreign invaders. It is vital to graft new healthy cells that live in harmony with the body of the existing patient.

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