Success Story: Amplifying the Patient Voice in Myeloma Screening — Perluvinir and the iStopMM Trial
September 8, 2026
The iStopMM trial (Iceland Screens, Treats, or Prevents Multiple Myeloma) — a population-based randomized clinical trial screening for monoclonal gammopathy of undetermined significance (MGUS) — places patients at the heart of how research is designed, delivered, and shared. Led by Prof. Sigurður Yngvi Kristinsson at the University of Iceland in close collaboration with Perluvinir, the Icelandic Myeloma Organization, the study shows how genuine patient partnership can strengthen the relevance, feasibility, and reach of clinical research. Central to this effort are Perluvinir’s patient advocates — including Kristín Einarsdóttir and Kjartan Gunnarsson of the organization’s executive committee.
Addressing What Matters Most to Patients
MGUS is a common, usually symptom-free condition that can precede multiple myeloma and other related disorders. Although most people with MGUS will never develop a serious disease, the condition carries a lifelong risk of progression. From the outset, Perluvinir’s partners emphasized what mattered most to their community: a better public and patient understanding of MGUS and multiple myeloma, clearer information about disease progression and risk, and a way to identify people at very low risk and reassure them without causing unnecessary worry. Beyond safety and clinical results, Perluvinir’s partners emphasized the need for focus on patient-reported outcomes, quality of life and mental well-being.
A Model of Deep, Sustained Partnership
Represented by Perluvinir, patients and relatives were involved from the earliest stages and have remained engaged across the whole research lifecycle — contributing to study design, recruitment, ongoing conduct, and dissemination. Crucially, they were treated as equal partners rather than sources of input: their views guided decisions rather than simply gathering comments, and the team made space for patients to ask questions, raise concerns, and suggest changes grounded in lived experience.
How Patient Input Strengthened the Study
By reviewing patient information materials, consent forms, and follow-up procedures, patient partners improved the structure of the study and shaped key decisions, with special care for patient burdens, supporting a more individualized approach to follow-up. They also contributed to the clarity of how the disease, its risks, and study procedures are communicated ensuring that messages about risk and uncertainty are balanced, informative, and reassuring rather than alarming.
Innovation in Engagement: Reaching the Public
A defining feature of this partnership was the involvement of patient representatives in public recruitment and awareness at the start of the trial. Working with the research team, they crafted clear, relatable messages that they actively disseminated even with national television campaigns. This built trust across the population and encouraged people to take part of the study, thus supporting broad recruitment, and strengthened the long-term relationship between the research team and the patient community. The partnership also introduced a vignette-based survey on decision-making around bone marrow biopsy and a national patient conference on 14 October 2025 that combined scientific presentations with patient stories and open discussion.
Patient-Centered Outcomes and Dissemination
Perluvinir continues to lead dissemination, working with the research team to make sure results reach the patient community clearly and meaningfully. Kristín Einarsdóttir, Chair of Perluvinir, contributed as a patient co-author to the scientific publication on the bone marrow biopsy decision model. This reflects a high standard of patient involvement, recognizing lived experience as a valuable source of expertise and helping ensure research findings are communicated in a patient-relevant and accessible way. This is a practical, transferable model of engagement that can be applied across other projects and disease areas.
Celebrating Exemplary Patient Partnership
We extend our congratulations to Prof. Sigurður Yngvi Kristinsson and the iStopMM research team at the University of Iceland, and to the patient advocates of Perluvinir, the Icelandic Myeloma Organization. Their work is a compelling demonstration of what changes when patients help steer a study from the very beginning: information people can actually understand, a study the public was willing to trust and join, and results that speak to the concerns patients raised.
It is a collaboration built on the conviction that good science and treatment improvements come from patients working alongside clinical and scientific expertise.