iStopMM Report from Iceland

The IMF team just returned from the exciting iStopMM kickoff meeting held on September 26-27th at the deCode Genetics facility at the University of Iceland in Reykjavik. A major project funded by the IMF’s Black Swan Research Initiative, iStopMM (Iceland Screens Treats or Prevents Multiple Myeloma) will examine blood samples from approximately 140,000 adults over age 40 in Iceland for the earliest signs of myeloma. The goal of this innovative and ambitious effort, as I have written about in previous blogs here and here, is to stop myeloma before it develops into full-blown disease.

So what does a “fast start” for a project of this scope look like? Professor Sigurdur Kristinsson and his team, along with Dr. Stephen Harding and Kelly Endean from The Binding Site, rolled out the details for the IMF team (which included President Susie Novis Durie; Lisa Paik, Senior VP, Clinical Education & Research Initiatives; Pierre Sayad, Senior VP, Global Medical Affairs & Strategic Partnerships; and myself).

A small town close to Reykjavik called Akranes (a population of approximately 6,000) was used as a pilot to start the project. Akranes was selected in part because it is a common source of myeloma referrals. The iStopMM team will attempt to understand why this town, long famous for fishing and whale-watching in the bay, is a source of myeloma patients. Is it linked to the more recent aluminum smelter located close by? Or are there other factors to be investigated?

Awareness campaign

But the main purpose of the pilot study was to determine how all the iStopMM procedures will work. Brochures and invitations to participate were mailed out a couple of days before our visit. All residents had the option to log in online or mail back the request. The online system uses the individual’s unique identifier in the Icelandic healthcare system and takes under a minute to complete.

Over the weekend, close to 20% of people had already signed up, and by a week later, it was 35% and rapidly rising. The information and invitation were also posted on Facebook, which is very popular in Iceland. With enthusiastic postings multiplying, the participation rate was set to increase in spectacular fashion. Of interest, it is possible to identify where each participant lives!

A small red tube

What are people signing up to do? Everyone over age 40 is being asked to give permission to use a small amount of blood, drawn at the time of any medical check-up, for special testing to see if a monoclonal protein is present. This is the screening process to identify MGUS, SMM or active myeloma.

The IMF team visited the laboratories to see how blood and other materials will be collected and tested. The central part of the whole project is a small red tube. This is the sample that is drawn when anyone in Iceland goes in for a check-up. With permission, using a computer coding system, a small amount can be set aside for MGUS testing.

As the study gets up and running, there will be hundreds of samples each day. Dr. Harding and Kelly Endean explained that The Binding Site facility in Birmingham, England will process these iStopMM samples at a rate of 300 samples per day. Results will be sent back to Iceland to review and proceed with the next steps, depending upon whether a monoclonal spike is detected or not.

iStopMM hits the road

It was remarkable to see how carefully the iStopMM team had planned the logistics. Two team members had already completed a field trip to more remote communities to discuss logistics with smaller laboratory facilities. Showing their enormous dedication, they actually slept in a tent at the side of the road since no hotels were available!

The key to success in Iceland is awareness. Expectations are high. Although typical participation rates in screening studies are 20% or less, better than 70% is expected for iStopMM as the result of the intensive outreach planned. During the visit, I was interviewed by Icelandic television and the iStopMM PR agency to help promote the importance of the project. The former president of Iceland, Jóhanna Sigurðardóttir, and the Health Minister, plus the Chancellor of the University of Iceland are also strong supporters. With this visibility, great success is a high probability.

Next steps

Once screening is accomplished in the coming months, the project really kicks into high gear. Patients with MGUS, SMM, and MM will be identified, tested and set up for monitoring or treatment. I will update readers with the details of this phase of iStopMM as they emerge.

I hope this gives you a flavor of what is going on in Iceland. And let me just mention what an amazing place Iceland is! The IMF team had time for a brief tour, including to the Blue Lagoon, over which we were most fortunate to see spectacular “Northern Lights.” We also saw the tectonic plates: the boundary between Europe and North America.

I am thrilled to share the details of the iStopMM kickoff visit and will continue to keep you updated with more information as we move forward!

Prof. Kristinsson describes the iStopMM project in an interview with IMF-TV here

Image of Dr. Brian G.M. DurieDr. Brian G.M. Durie serves as Chairman of the International Myeloma Foundation and serves on its Scientific Advisory Board. Additionally, he is Chairman of the IMF's International Myeloma Working Group, a consortium of nearly 200 myeloma experts from around the world. Dr. Durie also leads the IMF’s Black Swan Research Initiative®.

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