Iceland screens, treats, or prevents multiple myeloma (iStopMM) study

Participants could provide informed consent through three different mechanisms:

1. returning a signed informed consent form by mail, 
2. registering electronically using a participation code included in the invitation letter, or 
3. through a secure internet gateway provided by the Icelandic government (island.is), which is accessible to all residents through a secure electronic authentication process. The only exclusion criterion was previously known LP, other than MGUS.

After enrollment, serum samples for screening are collected alongside the collection of blood during clinical care in the universal Icelandic healthcare system, including blood banks (Fig. 1). The study team in collaboration with Landspítali—The National University Hospital of Iceland (LUH), developed an electronic system linking participant data to the central laboratory network of all major and smaller urban healthcare institutions, which covers at least 92% of all Icelandic residents. The system notifies healthcare workers to take an extra blood sample for the study at the point of clinical blood sampling. 

For smaller rural institutions and private clinics, a manual system was developed whereby laboratory technicians crosslink left-over samples marked for destruction to registered participants and in some cases ask their patients if they are participants in the study and draw an additional sample for the study. To capture samples from participants who do not require clinical blood sampling, an active sampling drive was initiated after three years of passive sample collection.

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Principal investigator

Dr. Sigurður Yngvi Kristinsson is a Professor of Hematology at the University of Iceland and specialist in internal medicine and hematology at the Landspitali University Hospital. He has led several large population-based myeloma studies in collaboration with major research centers and is a frequent speaker at international hematology conferences.