David Dombeck, a participant in recent MS research efforts at the Rocky Mountain MS Center at University of Colorado.
For this issue of InforMS, we sat down with David Dombeck, a research participant at the Rocky Mountain MS Center at the University of Colorado. David was diagnosed later in life, and his journey into research has been shaped by curiosity, purpose, and a desire to help move the field forward and help others. In our conversation, he shares what motivated him to take part in clinical trials, what the experience has taught him, and the sense of connection he’s found in the MS community along the way.
InforMS: David, can you share a little about your MS journey and how you first learned about research opportunities?
David: I probably experienced MS symptoms for three to five years before I was diagnosed. Our healthcare system is pretty segmented, so I saw a lot of specialists — cardiologist, urologist, ophthalmologist, chiropractor, physical therapist, interventional radiologist, pain management specialist, massage therapist, acupuncturist, to name a few. Everyone looked at their own piece of the puzzle, but no one could put everything together. I knew something was going on within my body, but we didn’t have a diagnosis.
Eventually, following multiple emergency rooms visits, I encouraged my primary care physician to order an MRI. That MRI showed some T2 lesions that were suggestive of a demyelinating disease — a big “aha” moment. I was fortunate to get an appointment at the Rocky Mountain MS Center at the University of Colorado. My wife came with me to meet with Dr. Corboy, who took the time to really listen. As I described all my symptoms, both visible and invisible, he immediately recognized how consistent they were with MS. After reviewing my MRIs, he confirmed the diagnosis.
At first, I went through the normal questions like, why me? how me? But honestly, it was also a relief to finally have an answer. Then I wanted to know what my options were. At that time, there was only one approved treatment for my primary progressive MS diagnosis, and it hadn’t been studied in patients over 55. I was 61.
I asked if there were any research opportunities, and Dr. Corboy mentioned that some were available. Even before the appointment was over, I knew I wanted to participate.
I signed up for the biobank study and went home to review the study details, look things up on clinicaltrials.gov and weighed the benefits versus risks. I probably made my decision that same day.
My motivation really came down to wanting to move the needle, especially for people who are diagnosed with MS later in life. Given my age and limited treatment options, participating in research felt important. And personally, I try to focus on controlling the controllables: diet, exercise, and, most importantly for me, attitude.
InforMS: What was the focus of the research study you participated in?
David: It was a Phase III clinical study of fenebrutinib, a BTK inhibitor, compared to Ocrevus. It was a double-blind study, but I was guaranteed to be on an active drug — just one or the other.
Interestingly, just last Friday, November 14, I received a call that the study was being stopped after 197 weeks, and they were moving to data analysis. The study was unblinded, so I learned that I had been on Ocrevus.
InforMS: What was it like participating in such a long trial?
David: The level of care was remarkable. Every 12 weeks, I saw Dr. Alvarez and the research team. Over nearly four years, I built real relationships with the study coordinators — Cecilia and especially Lilli, whom I’ve known since the beginning. It created a strong sense of connection and purpose, working together to advance science and access cutting-edge medications.
InforMS: You’ve spoken powerfully about what motivated you to participate in research. What expectations did you have going in, and how did the reality compare?
David: I’m a pharmacist by profession, and I’ve been part of investigational study teams, mostly in oncology. So I had a good understanding of how clinical research works. When I learned about the fenebrutinib study, I went through the protocol, highlighted key points, and felt comfortable with the structure.
My expectations were that the research team would provide close monitoring and be responsive and they absolutely were. Every 12 weeks I had visits, and anytime I had questions (and I probably went deeper than most participants because of my pharmaceutical background), the team was always available. I also provided feedback throughout the study, which I think was helpful.
InforMS: Were there any aspects of the study experience that surprised you, either positively or unexpectedly?
David: Yes. One surprise was that participating in this study opened the door to joining another study in the UCHealth physical therapy department. That experience was phenomenal. It tied directly into my philosophy of controlling the controllables like diet, exercise, and attitude. I worked with a world-class physical therapist and still use the exercises today.
Another area was how participant feedback could improve the study. For example, early on we were given pre-medications before cognitive testing, which made me drowsy. I mentioned that it didn’t make sense to do cognitive tests under those conditions, and the protocol was modified. With nearly 2,000 participants worldwide, I’m sure others shared similar feedback.
Another example is that infusion days were very long because they also required an MRI with and without contrast afterward. For people who traveled long-distances for the appointment, it made sense so that they could do everything in one day, but for others it could be very burdensome and a long day. I asked whether the MRI really needed to happen the same day. Eventually, the protocol was adjusted to allow more flexibility. It made the study more patient-centered.
These improvements came in part from my experience working in oncology studies, where we regularly provided feedback to improve patient experience. Research isn’t rigid; it’s about learning and adapting and being flexible to both meet the protocol guidelines, while meeting the participants requirements.
InforMS: You’ve mentioned connection. Can you share more about how participating in research has helped you feel more connected to the MS community?
David: Absolutely. I feel much more connected now. One big part of that is simply becoming aware of all the resources that exist. I really make an effort to attend the Rocky Mountain MS Center’s Education Summits because they’re so valuable. You learn so much, and there’s something powerful about sitting at a table with others who understand what you’re going through. Even a small conversation like, “How are you feeling?” “What symptoms are you dealing with?”, can be incredibly meaningful.
I’ll never forget that once, while we were celebrating a milestone birthday for my wife in Hawaii, I still joined the virtual Education Summit. That’s how valuable they are to me.
Research has also connected me to other organizations. I participated in a coaching study through another MS organization, and it ended up being an amazing experience. My coach and I were both pharmacists, and her son was an NHL player, and I’m a big hockey fan, so it just felt like the universe placed us together. It helped me set expectations, understand my symptoms, and navigate life with MS in a really supportive way.
All of this including the research, education, and coaching has made me feel deeply connected to the MS community. And honestly, when you see that these Summits reach people from every state and multiple countries, it shows just how much value they bring. I’m grateful to be part of it.
InforMS: For someone reading your interview, what would you want them to know about participating in a study? What’s most important for people to understand if they’re unsure or hesitant?
David: I think there are a couple of key things. First, you’re always in control of your own health journey. Participating in a study doesn’t take that away. What it does offer is incredible access to your MS healthcare team, often much more frequent and direct than typical clinical care.
Second, participating in research is really a way to contribute to the greater good. You’re helping future generations. For me, when I was diagnosed at 61, there had been very little research that included people over 55. So being part of this study felt like a chance to contribute information that had been missing.
Third, you’re helping advance science and technology in a very real way. It’s about being a good citizen in the MS community and helping move the field forward.
And one more thing, it sometimes gives you access to cutting-edge therapies that aren’t yet commercially available. You may benefit from treatments earlier than you otherwise could.
InforMS: Looking ahead, what gives you the most hope about MS research and its impact on future care and support?
David: Well, I’ve been a pharmacist for more than 35 years. When I first started, there was just one option for MS patients, a high-dose steroid. And even that was really just for symptom management. To see where things are now, two or three decades later, with 20-plus approved treatments… it’s incredible. Science is absolutely moving in the right direction, and that progress is entirely because of clinical research and the people who take part in it.
That’s what gives me hope. It’s not a quick solution, but when you compare where we were then to where we are now, it’s remarkable. Research keeps pushing forward, technology keeps improving, and we’re learning more every day to improve treatment options.
InforMS: You mentioned earlier how responsive the team was throughout the study — answering questions, taking your feedback, and making changes. Now that the study has wrapped up, what would be helpful for you moving forward? What do you hope to learn from the results, and do you know yet what the next steps will look like?
David: I actually just found out I was unblinded about one week ago. I asked the team the same thing: what happens next? I have follow-up visits every 12 weeks, so at my appointment in early January, Dr. Alvarez will walk me through everything. In this protocol, there’s an option to move into an open-label extension. I’ll need a washout period from the Ocrevus, but once I learn more, I’ll most likely participate in that open-label study. For me, that continuity, responsiveness, and one on one communication about options and opportunities going forward matter a lot.
InforMS: What other aspects of participating in research stood out to you?
David: Yes, there’s one more thing I should mention. Right after I was diagnosed, I would have faced the typical insurance delays before starting treatment. Through the study, I was able to begin therapy right away, and with the medication my team felt was the best fit.
Dr. Corboy explained that the efficacy of Ocrevus for the my diagnosis was underwhelming, though it was the best option available for primary progressive MS. And under normal insurance rules, I would have had to “fail” other medications first. It might have taken a very long time to have gotten insurance to approve Ocrevus. So it really was a win-win: immediate access to treatment, access to care, and no delays. And I had a 50/50 chance to get on the therapy being studied.
InforMS: As you look back on the entire experience, from diagnosis to nearly four years in a clinical trial, what has participating in research meant to you personally?
David: Participating in research has really given me direction at a time when there were so many unknowns, and it allowed me to channel my energy into something constructive to advance medical knowledge. Being part of a study helped me feel like I wasn’t just reacting to MS; I was actively contributing to better understanding it. It also connected me to a community I didn’t know existed before, and that sense of purpose and connection has been invaluable. Ultimately, it made me feel like I was making a difference, both for myself and for others who will face MS in the future.
InforMS: Is there anything else you’d like to share with our readers? Something we didn’t ask that you wish we had?
David: I’m just extremely grateful. I’m grateful to live so close to the Rocky Mountain MS Center at the University of Colorado. There’s a phenomenal world-class research team there. The care – from my diagnosis all the way through 197 weeks of participating in this study – has been outstanding. Everyone has been professional and supportive. I’m just extremely thankful for the opportunity to participate in MS research and the care I’ve received to advance future treatment options.
