November 7, 2015

A Virtual Register for the Rest of the World

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We were excited about this trip to Minneapolis  and were made to feel very welcome

We were excited about this trip to Minneapolis and were made to feel very welcome

Margot’s auntie Nadia & I were pleased to have been invited to attend the World Marrow Donor Association (WMDA) Fall Meeting in Minneapolis this week, so I find myself posting this blog from the airport, as we wait for our connecting-flight home following a few very full days.

WMDA began in 1988 and is a global association, representing 73 donor registries, 158 cord blood banks, 350 donor centres, and 1,615 transplant hospitals from 52 different countries. It provides a forum for discussion of issues regarding the clinical use of blood stem cells from unrelated donors across international boundaries and for formulation of guidelines on logistics, quality control, ethics, finances, information technology and registry accreditation.

We’ve had a fascinating trip. 

It has given us a glimpse of what’s involved with running a registry and it’s uplifting to see how much great work goes on behind the scenes and the positive collaboration, striving to make a vital difference for both patients and donors, in spite of all the challenges. 

with Stephan & Sabine from DKMS in Germany, Betina from the Danish Registry & Ann from Anthony Nolan in the UK

with Stephan & Sabine from DKMS in Germany, Betina from the Danish Registry & Ann from Anthony Nolan in the UK

with Amal from the Hadassa Registry in Israel

with Amal from the Hadassa Registry in Israel

But for Nadia and I, the best thing of all was that we got to meet many of the dedicated people who work in the blood stem cell & bone marrow communities around the world; from both the large organisations like the US National Marrow Donor Program (NMPD) and Be The Match down to the smaller registries and even some newcomers that are only just setting up a registry for the first time, in countries like Colombia and Peru. 

Yesterday, I was privileged to have been asked to give a presentation on social media – it’s apparently the first time a non-member has been invited to speak – after which I took the opportunity to make two asks from those assembled: 

1 – to request their support for our awareness day on 7 October next year – we would love to have a more international flavour to the Team Margot Stem Cell and Bone Marrow Awareness Day and

2 – to raise an issue that has been on my mind for the last 6 months or so, namely that of a Virtual Register for the Rest of the World i.e. a register for all the countries that don’t have one already. I’m calling it virtual because to my mind, the register doesn’t necessarily reside within the country in question (I don’t believe it needs to).

Screen Shot 2015-11-06 at 22.05.24As it stands, there are almost 80 registries in 54 countries which is great, but that nevertheless means that three quarters of the worlds countries DON’T have a bone marrow registry. 

So that got me thinking: what happens when someone from one of the countries that doesn’t have a registry decides that they want to join the bone marrow register ? How are they able to do that ?

The simple answer is that they can’t register anywhere. 

When I signed up as a potential bone marrow donor, I requested my DIY swab kit online via Delete Blood Cancer UK and then received it by post. I then swabbed, filled in the form and returned as directed.

So, why can’t people from countries that don’t have a register do something similar too ? Why can’t we make it possible for their inhabitants to do the same as I did – receive a DIY kit in the post which they can use and return as directed, so that their details go onto a register ?

I do appreciate that the registration part is the relatively easy bit and that the real issues would arise when a patient is then matched to someone on the virtual register. 

But having done some digging, I believe that for the most part, the issues & complications that arise after a match is found are not insurmountable.  It’s difficult, but not impossible.

I accept that this suggestion might sound rather naive, but I understand that a virtual register would help plug the diversity gaps that exist – after all, the countries without a register are precisely the same countries where the much needed & more ethnically diverse matches might actually be found. 

In that sense, a virtual register for the rest of the world would provide a service for all the existing stem cell communities and a different dimension to the worldwide search process that doesn’t currently exist.

And of course, potential matching donors for patients who need a bone marrow transplant in those same countries. Because currently, if someone from a country that doesn’t have a bone marrow register needs to have a bone marrow transplant, there is no ready solution. 

That’s just their bad luck.

Fundamentally, this idea of a virtual register for the rest of the world is about making more matches and in that sense, I believe everyone in the stem cell community wants the same thing !

I took the opportunity to pose the following question:

“What’s required to sign up potential stem cell donors in countries without a register, so as to provide more donor matches?”

We're looking forward to getting home and seeing our families

We’re looking forward to getting home and seeing our families

Clearly, this isn’t a question where you can arrive at an easy or quick answer – it will need some discussion and debate ! so I am very grateful to the WMDA executive team for agreeing to send a follow up email that I have drafted to all their members, which includes a link to a clever online forum that’s designed to harness the ‘wisdom of the crowds’.

My parting remark was to urge all present to take the time to participate and contribute to this online discussion. I’m hoping this will spark a period of consultation and with a bit of luck, we can move the matter forward.

More as it happens.

Team Margot
Together, saving lives

Husband to Vicki and father to Oscar (2007), Rufus (2008), Digby (2015) & Margot (2012-2014)

Posted in: Journal