IBC 2025 | Improving data collection to inform treatment decisions for patients with precursor conditions

I think the biggest thing patients are considering when they think about treatment, especially for precursor conditions, is the risk versus benefit. So their biggest question is, do I need to get treated? And if so, with what? What’s going to be my best option? And since there’s such a debate in the field right now with treating precursor conditions, it would be helpful to have data. I think that’s the single most important thing that patients have in order to make these types of treatment decisions and I think having a greater consensus within the expert community would be helpful for patients. So I think that the more risk stratification that the myeloma experts can work on would pay off major dividends in the end for patients so that they know, do I need to get treated? With what? For how long? Do I stop? Are we going for a cure? Are we going for just preventing progression? What’s the goal? And then patients would basically understand the rationale for that therapy for them. I think the need for data is imperative. So what we’ve done at the HealthTree Foundation is invite patients to add their data to these data sets. So we have them connect their records from multiple centers into a single patient profile and then we open that data up to the research community. So we can help answer some of these types of questions because that’s what we need for tens of thousands of patients in order to see this pattern recognition. I think the problem right now is that there’s just not enough data to put it together to answer the questions that we need answered.

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