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How we search for a lifesaving match

Every single day, the Anthony Nolan search team scours stem cell donor registries across the world, looking for a match for a UK patient in need. In today's blog, Katherine (our Search & Selection Coordinator) explains a little about what her role involves.

 

 

For the last two years I've been working as a member of the Anthony Nolan Search team, matching patients with their potential donors.

That means that I'm one of the first cogs in the wheel when a patient requires a transplant!

When a patient is referred to us for a search, all their details are sent over from the hospital. Then we enter them onto our database – called Solar – and start hunting for donors.

 

The art of HLA-typing

To find potential donors, we have to make sure that the patient and donor are genetically 'matched'. To do that, we look at a group of genes called the 'Human Leukocyte Antigen'…or HLA for short.

These genes are like a fingerprint which the immune system uses to recognise a cell as belonging to the body – or as being 'foreign', and potentially harmful.

If a person's immune system encounters some HLA which it doesn't recognise, it goes into full-on attack mode and destroys what it sees as an invader. So we have to get the match as close as possible, to stop the donor cells thinking that the body they've been transplanted into is foreign and attacking it.

There are 5 HLA genes which we look at – called A, B, C, DRB1 and DQB1 – and everyone inherits one copy of the genes from their mother and one from their father, meaning that overall we have to match 10 genes. Which is why we talk about a donor being a '__ out of 10 match'.

 

So, what do our searches actually involve?

Well, to start with, we look for donors in the UK.  You may be aware that there are four registers in the UK – Anthony Nolan, the British Bone Marrow Registry, the Welsh Bone Marrow Donor Registry and Delete Blood Cancer UK – but what you might not realise is that, although it's Anthony Nolan that runs the searches, when we search the UK we look at all four registers simultaneously.

So if you’re a donor who’s a match for a patient, we’ll find you whoever you register with!

But we don't limit ourselves to the UK. We also use a great website called Bone Marrow Donors Worldwide (or BMDW), which has a list of over 25 million donors registered all over the world, and shows us where to look if we can't find a good match in the UK.

When we look at BMDW, we can see if a patient has a potential donor in the USA, or in Germany or China or Australia or Brazil or South Africa or...well, you get the idea!

Once we have the list of countries to search, we fire off messages to the registries in those countries and ask them to send us a list of their donors.

We get most of these back the next day, and put them all together into a report for sending to the hospital. Staff there then sift through it to find the best donors and let us know who they want to test further.

We then work with the donor registry to organise any further testing that’s required to work out which donor is the best match for the patient, and when that’s all been completed we can hand everything over to our donor provision team who will organise the actual transplant.

One of my favourite things about this job is that every day I talk to people all over the world  and we all work together to try and find that perfect match. I also like that in my role, ‘Who do I email in Taiwan?’ or ‘How do I contact Uruguay?’ are valid questions!

 

Finding that one lifesaving match

The process of running a search is the same for every patient, but the results of those searches can be very different.

Some patients will have thousands of potential matches just in the UK, whereas others might have just one or two matches dotted around the world and, occasionally, some people have none.

It's quite easy for the process to become almost automatic – the search comes in, you add it to Solar, add it to BMDW, click run, print results, send to hospital.

But you can never forget that at the other end of every search there’s a real person who needs your help – and they probably have all of their fingers and toes crossed that you can find them a match.

Whenever I run a search where I end up printing pages and pages of possible donors, I feel a little bit of relief because I know that the recipient has a great shot at finding the perfect match.

But sadly, those cases don't tend to stick in my mind, as they don't hang around for long.

The ones that I remember are the patients who don't have many options. The ones where I have to look again every few months in the hope that someone new, somewhere in the world has joined a registry and might offer a glimmer of hope.

These files sit on my desk or in our filing cabinets, growing fatter and fatter every time we run a new search, only to find out that the perfect donor still hasn't signed up.

But that makes it all the sweeter when we try again – and find there is someone new on the list. And then we know this could be the magic opportunity the patient's been waiting for. It can feel like a major victory!

We don't get much information about our patients – name, age and diagnosis is about it – but it's funny how attached you can get to someone when you know so little about them.

Before I joined Anthony Nolan, I worked in a research lab, trying to develop a treatment that might be of use to someone many years in the future.

While that was great (and still a worthy cause), it feels really good to come in to work now. Because I know what I do today could change someone’s life. Not in a couple of decades – but in a couple of months.

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