Searching the Donor Registry

[Sue&Dave]

Does anyone know for a fact how often the registry is searched once a formal search has begun? We were told by the transplant team that if the initial search does not turn up a donor, the chances of finding one are pretty slim. I know that a preliminary search was started last year at one Center of Excellence, and I am pretty sure a formal search was started at our current center MSKCC. But how often does the search occur? Is it an automatic crawl of the web every so often or does it require someone to manually comb the results? Just wondering if perhaps a donor has joined in the past 12 months or so and because we have decided to hold off on a cord-blood transplant for a while, maybe we don't even know about it?

[bailie]

In my situation the preliminary search was troublesome. They kept looking in secondary data bases and found a suitable match after about five months. It is my understanding that there is not a totally central data base yet, although Be the Match has more connections than others. We finally came up with a 20 year-old male from Germany.

[Sue&Dave]

What is really interesting is that we have been covered by two different insurance companies during this timeframe and technically neither of them pay for the search until you go to transplant. Geez - isn't that too late for a lot of people? And the type of donor you may (or may not) have could very well dictate your type of treatment. If my husband had a 10/10 MUD we might strongly consider the transplant. That was the main reason we wanted to talk with the transplant team in the first place. We knew a preliminary search did not show any matches, so were hopeful that a formal search would reveal a match. It is still very confusing.

[bailie]

Have you contacted Be the Match about this? It seems that I remember the search costs were paid for by this group. The search is not very costly. We had a Be the Match representative in our hospital.

[Neil Cuadra]

Once you learn what your HLA types are (A, B, C and DR), you can do your own informal search on the National Marrow Donor Program's MatchView page.

You can do a search there as often as you want. If something new appears in your results, then you ask the donor search team to take a new look through official channels.

[Sue&Dave]

Hmmmm.... interesting. We will look into continually doing the search ourselves thru Be the Match. We were told that the formal search can be very expensive, but that there are many grants that can help offset the cost. Also the hospital said they would hold off collecting on the search costs until transplant, when the insurance company will then pay. They did a cord blood search, found a match, but then because of 3 brain surgeries in the meantime we decided not to go that route. I have a feeling at some point there will be an $8k bill waiting for us for that search

[Meri T.]

Originally Posted by Neil Cuadra

Once you learn what your HLA types are (A, B, C and DR), you can do your own informal search on the National Marrow Donor Program's MatchView page.

You can do a search there as often as you want. If something new appears in your results, then you ask the donor search team to take a new look through official channels.

Thank you Neil, I did a search just now with my HLA typing. Results came up 0 for both 8/8 Adult donors and 6/6 Cord blood. However, I'll let my friend know about this search page. Maybe she will have better luck.
Meri