Key Takeaways from the IMF Facebook Live on Myeloma Clinical Trials

On Saturday, July 19, International Myeloma Foundation (IMF) Chief Medical Officer Dr. Joseph Mikhael — along with SparkCures Founder & CEO Brian McMahon and 20-year myeloma patient and advocate Thomas Goode — hosted a Facebook Live Q&A session to explain myeloma clinical trials in depth and to answer some of the most pressing questions about the disease. 

“Today's focus is clinical trials. We want to help you understand and demystify the concept, as well as promote the concept of research, and explain why and how clinical trials are so critical in multiple myeloma. Furthermore, we happen to be hosting this Facebook Live in lovely and delicious Minnesota,” said Dr. Mikhael, referring to the location of the ongoing IMF Support Group Leaders Summit (SGLS) at that time. 
Dr. Mikhael introduced his two colleagues — 20-year myeloma patient and advocate Thomas Goode, and Brian McMahon, founder and CEO of SparkCures. 

The IMF has partnered with SparkCures to help myeloma patients find clinical trials that are relevant to them. SparkCures specially designed a clinical trials search engine to help patients and caregivers discover and explore eligible clinical trials across the U.S.” 

Here are some of the top takeaways we gathered from this informative and insightful Facebook LIVE session. (EDITOR’S NOTE: Viewers’ questions and speaker panelists’ responses and insights have been edited for conciseness and clarity.) 
 
Dr. Mikhael: We have had thousands and thousands of patients benefit from this system — they are able to search for clinical trials and find ones that are available to them, with many having gone through these clinical trials themselves. 

Being involved in myeloma research for 25 years, I have never seen a time like now in terms of the sheer number of clinical trials as well as promising treatments for myeloma patients. 25 years ago, most of our patients only lived from one to two years at the most. Now, we’re seeing the average survival well beyond 12, if not 15 years.  

However, myeloma is still a terrible disease, and sadly, there are still patients who succumb to the disease early on, after being diagnosed. 

Clinical trials drive the engine for our research, so we can discover new options for patients. Often, when they hear about clinical trials, they ask these questions: “Am I going to be a guinea pig? Am I donating my body to science? Am I doing this for someone else?” 

They are probably thinking about the terrible history of some clinical trials that were not conducted properly. However, we have learned a lot from these past mistakes. We now have protections in place, as well as careful approaches so that all can benefit from these clinical trials.  

Which brings me to Thomas and to our second major IMF initiative. Apart from the IMF’s partnership with SparkCures, we also wanted to hear from clinical trial participants who are willing to share their firsthand experience — we think this is considerably more powerful.  

We took five patients (including Thomas) and one care partner from communities that are historically underrepresented in clinical trials and brought them together at the Diversity in Clinical Trials Academy. We were able to capture their experiences, so you can have a deeper understanding of clinical trials from the perspectives of both the patient and care partner. 

Thomas, how was your experience at the academy? Why do you think it’s important for patients who participate in clinical trials to share their stories?  

Thomas Goode: It meant a lot to me because I got to learn from others about their cancer journeys and clinical trial experiences. Sharing my story felt powerful—especially knowing it could help people of color and those in underrepresented communities feel more open to clinical trials. When they see someone like them participate, it can break down some of the fear and mistrust tied to the history of these trials. 

Dr. Mikhael: Beautifully said. The goal isn’t to pressure anyone into trials — it’s to recognize that clinical trials are part of the full range of treatment options. When I started treating myeloma 25 years ago, we only had a couple of drugs. Now, we have over 20 — with more on the way, including a recent new approval. Having options that fit your life, and your specific type of myeloma is essential, and clinical trials should be part of that consideration. They won’t always be available or a good fit, but many patients are here today because of them. 

That’s enough for me to start. Thanks, Brian and Thomas, for kicking things off. Now let’s get to the questions—the good stuff. We’re here to give you credible, helpful answers.  
 

I have smoldering myeloma. Would a clinical trial benefit me? I have been told that it's aggressive, I was diagnosed in November  2024 with no treatment.  
 

First, myeloma exists on a spectrum: from MGUS to smoldering myeloma to active myeloma. We design clinical trials for all stages—not just for treatment, but also for quality of life and supportive care. 
 
For our friend who was diagnosed with smoldering myeloma—we’re sorry to hear that, but glad it was caught early. There are some treatment options, though this area is still evolving. Trials like AQUILA are exploring whether early treatment (either aggressive or gentle) can delay or even prevent progression to active myeloma. 
 
Because we don’t have all the answers yet, research is key. We encourage you to visit myeloma.org and use the SparkCures tool to explore trials. In the end, your approach might be early treatment or simply watchful waiting—both are valid depending on your case. 
 

Are clinical trials using MRD-negative status to guide decisions between maintenance therapy and ASCT? And if a patient is in remission or doing well on maintenance, how is that defined—and is MRD being used to guide those decisions? 
 

This is a great question and ties into an exciting area in myeloma research: MRD, or minimal residual disease. It refers to using highly sensitive bone marrow tests to detect tiny traces of myeloma—even as small as one in a million cells—after it's no longer visible in blood or urine tests. If we want to cure myeloma, we need to eliminate every last trace. 

And yes, many clinical trials are now exploring how achieving MRD negativity can guide treatment decisions—it’s a promising direction. 
 
The goal is to get patients to a point where there's no measurable disease—and to keep it that way over time. Even if myeloma seems gone, we need to be sure it stays away, since small traces might still remain. That’s where MRD testing comes in. It could help guide what we do next. 
 
For example, the recent MIDAS trial from France suggests that some patients who reach MRD negativity after six cycles may not need a stem cell transplant. It's early, but promising—it could mean less therapy for some. 
 
MRD is also being studied to adjust maintenance treatment. Traditionally, maintenance follows transplant, but MRD might help us shorten or lighten that therapy—and eventually stop it altogether. MRD could help us get there. So yes, trials are actively looking at this. 
 

I’ve been provided with a clinical trial that has random arms. If I'm in the standard of care arm, what's the disadvantage? 
 

To quickly summarize: clinical trials come in different phases (phase 1, 2, and 3) and can involve testing a new drug, comparing treatment strategies, or both. Some trials use randomization, which is like flipping a coin to fairly assign patients to different groups. Neither the patient nor the doctor chooses the group, which helps remove bias. 

In trials like the one discussed, there may be multiple arms—for example, three different treatment approaches.  
 
Patients have a chance of being assigned to anyone, and they’re informed of this up front. But it’s important to know that even if you're not in the "new drug" arm, you are still receiving the standard of care. We would never include a trial arm that offers anything less. 
 
This is key because there’s a common myth that if you’re not in the experimental group, you’re getting something inferior—that’s simply not true. Every patient in a trial gets appropriate, evidence-based care. 
 

My father was offered two clinical trials. When you have these options, how do you decide and how do you go through the determining factors? What does that look like? 
 

Hopefully by now, folks have already visited SparkCures to see which trials they're eligible for. After all, deciding to join a clinical trial is a big decision. 
 
Like any treatment choice in myeloma, it should be shared decision-making. It's not about a doctor saying, "Here's the treatment, take it." It’s about finding the right fit based on your preferences, goals, and the nature of your disease—and that requires open conversation with your care team, which often includes more than just your doctor, like research nurses and coordinators. 
 
You also have the right to include anyone important to you in that discussion—family, friends, even a spiritual or community leader. We’ve seen firsthand how meaningful that support can be. 
 
If you have multiple trials to consider (or even just one) ask key questions: Is it randomized? What’s the trial comparing? What are the side effects? How often do I have to come in? Are there extra tests involved? These details matter, and they help make sure you're fully informed and closely monitored. 
 

There are reasons that people can join a clinical trial —the inclusion-exclusion criteria. When do you think that MRD is going to be used for measurable disease requirement instead of an M spike or free light chains? When do you see that occurring from a trial standpoint? 
 

Right now, most clinical trials require a measurable amount of disease, like an M spike or light chains, so we can clearly track if treatment is working. If there's only a tiny trace, it’s hard to measure progress. 
 
But with advances in MRD testing, which can detect very small amounts of disease, we’re starting to see a shift. We’ll increasingly use MRD as part of trial eligibility, depending on the context. It opens the door to including patients with lower disease burden in future studies. 
 
This matters because some patients don’t qualify for trials simply because their M spike or light chains aren’t high enough—especially with varying units that make things even more confusing. 
 
Others have myeloma that doesn’t show up in blood or urine but is visible on scans—called extramedullary disease. There’s been a real push to make trials more inclusive while still maintaining the ability to measure meaningful results. We can do both: keep trial integrity and open access to more patients. 
 

What makes the SparkCures clinical trial platform unique? 
 

The biggest challenge is simply awareness—many people don’t even know clinical trials exist. Advocacy groups are doing great work to raise visibility, and that’s a huge win. 
 
While clinicaltrials.gov is a good resource, it can be hard to navigate. If you can make sense of it, great. But just like choosing a myeloma specialist, it’s important to find a trial resource that fits your needs and communication style. 
 
From our perspective, after 10 years of doing this as former caregivers, we know how overwhelming it can be. That’s why we focus on high-quality, up-to-date data, pulling from multiple sources—not just clinicaltrials.gov. We look at your treatment history, labs, and current situation to help match you with the right trial. 
 
We’re not doctors, but our role is to help you have better conversations with your care team. Whether it’s through our one-on-one navigation or other resources—use whatever works best for you. Of course, we’re proud of what we do here.  
 
 
Dr. Mikhael: In closing, Thomas, if you have the chance to talk to the tens of thousands of people on this Facebook Live — what would you want people to know about clinical trials? 

Thomas Goode: The most important thing to know is that being offered a clinical trial is not a death sentence. It doesn't mean you're out of options or at the end of your journey. Trials can be a helpful part of treatment at any stage—not just a last resort. 

In case you missed it, you can still watch the Facebook Live Q&A in its entirety. 

To experience personalized clinical trial support and to learn more about eligibility requirements, visit myeloma.org/sparkcures/