On Thursday, November 15, the iStopMM (Iceland Screens Treats or Prevents Multiple Myeloma) team gathered at the deCODE genetics facility in Reykjavik, Iceland, for the 3rd Annual iStopMM research review meeting. This marked the end of a successful second year and the launch of the project’s third year. The IMF-funded project’s remarkable achievements, including the recruitment of more than 80,000 Icelandic participants—making it the world’s largest myeloma study, drew the attention of Iceland’s president, Gudni Thorlacius Jóhannesson. He was the first to publicly volunteer for the project when it launched in 2016. This year, he graciously invited IMF president Susie Durie and myself, iStopMM principal investigator Prof. Sigurdur Kristinsson, Una Jóhannesdóttir, and three myeloma patients active in the country’s patient organization, Kristín Einarsdóttir, Kjartan Gunnarsson, and Gunnar Rúnar Kristjánsson, along with their spouses, to a luncheon on November 14 at the president’s residence, Bessastadir.
A Presidential Seal of Approval
President Jóhannesson welcomed us with a champagne reception, during which he gave a memorable and emotional speech, praising the ongoing collaboration between the IMF and the iStopMM team. These, he said, were “words of gratitude.” He reminded everyone why we were there: “because we have a duty in society to help each other.” The idea of duty and responsibility was illustrated, he said, in a poem by Tómas Gudmundsson, a favorite Icelandic writer and poet. Advancing medical science is the key objective, and the next generation will survive because we are moving in the right direction.
He emphasized the need for “positive hope” in projects such as ours and said that the bright sun coming over Iceland’s Blue Mountains at 10:20 that morning was a glorious moment that inspired his words. He credited another Icelandic author, Audur Ava Olafsdóttir, for describing in a recent novel how the sunrise triggered new hope for the future.
In conclusion, he said, “I am meeting new people. I believe in humankind!” This moving welcome invigorated all of us to achieve the maximum success for Iceland and the global myeloma community.
Impressive Progress Report
The progress achieved by the 17-member iStopMM team has been so impressive that enthusiasm was high as each group presented update details. More than 50,000 of the study’s participants have now had blood samples tested. They have proceeded to randomization for follow-up or more detailed testing and potential early intervention therapy. As part of this process, approximately 900 bone marrow tests have been performed and more than 100 samples tested using next-generation flow cytometry. The huge task of meeting with, examining, and fully evaluating each new participant is ongoing. Explaining, in person, the goals for the launch of all the components of the iStopMM project is, in itself, a large logistical operation.
Successes at Two Years
The many successes achieved by Prof. Kristinsson (University of Iceland) and the iStopMM team include:
Day-to-day operational refinements, adding new team members as needed.
Launching an email follow-up campaign to recruit the remaining 30,000 participants to obtain baseline blood samples. This is a carefully designed outreach, with emails going out at about 9:30 a.m. each day at the rate of 300 to 400 individuals at a time to avoid being designated as “spam.” Initial responses have exceeded 65 percent, a good first step to complete the blood-collection process.
Starting the quality-of-life study has been a key objective of the iStopMM project. It is led by Prof. Andri Steinþór Björnsson (Professor of Clinical Psychology, University of Iceland). Survey questions have been carefully structured to assess if the iStopMM screening has negative consequences, such as anxiety or “post-intervention stress” of any sort. Meeting each participant in the iStopMM clinic is a tremendous “stress reducer,” Prof. Björnsson reports.
Establishing the biobank of blood, bone marrow, and other samples has been a major study objective. Lead by Elín Ruth Reed (Natural Scientist: Head of Biobanking Laboratory, University of Iceland), an entire set of procedures for collection, distribution, and freezing of samples has been well-established. Building this research tool will offer myriad insights over the coming years. In sync with this, it has been no small feat to establish the next-generation flow cytometry laboratory, which is up and running. Prof. Alberto Orfao (University of Salamanca) visited as part of the review and was excited about progress, since he had helped with the acquisition of the new cytometer for the iStopMM group.
The planned neuropathy study has begun to evaluate nerve damage in patients with MGUS (monoclonal gammopathy of undetermined significance), as well as in patients with SMM (smoldering multiple myeloma), and MM (multiple myeloma). Initial results indicate that approximately 30 percent of patients have some degree of neuropathy. Understanding why, and planning early therapies, will be key.
Clinical trials (carfilzomib/lenalidomide/dexamethasone [KRd]) are now being offered when intervention is appropriate. This will become a most important aspect in assessing outcomes moving forward.
Very sensitive monitoring using mass spectrometry is being implemented by the Binding Site under the direction of Stephen Harding, the company’s Research and Development Director, who presented initial results at the review meeting. As Prof. Kristinsson likes to emphasize, “The early findings are preliminary,” but reveal that additional monoclonal proteins can be detected in participants who have been deemed negative using SPEP and IFE plus serum Freelite (standard) screening. The ability to study this early biology of the evolution of MGUS from the earliest time points, which may be in individuals as young as 20 years old, is truly exciting.
Myeloma Patient Seminar: On the day following the research review meeting, the local Iceland patient group, Perluvini –Myeloma, held their annual patient seminar. I was honored to present a summary of how the Icelandic research will impact the global myeloma community. It was wonderful that U.S. myeloma patient Michael Tuohy and his wife Robin Tuohy, IMF Senior Director of Support Groups, were present to witness this extremely positive and supportive meeting, as well as listen in to the research update. This experience was clearly impactful and can now be shared with myeloma support groups in the U.S.
The iStopMM program is off to a roaring start as it embarks on Year Three. It will lead the way in understanding MGUS, SMM, and MM, plus achieving best outcomes year by year. The IMF, which supports the project through our signature Black Swan Research Initiative, is proud of the work accomplished in Iceland on behalf of myeloma patients around the world, and honored to work alongside this dynamic, farsighted team.
Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to firstname.lastname@example.org. InfoLine hours are 9 am to 4 pm PT. Thank you.