Clinical trials for myasthenia gravis are at an all time high, but there is a lot that goes on behind the scenes that make a clinical trial even possible. The MGA works regularly with clinical trial coordinators, providing the latest research updates to patients at our service area sites including KUMC, MU, SLU, and WashU. We recently spoke with Andrew Heim, a research project manager at KUMC, to learn more about neuromuscular clinical trials and all that is entailed in the R&D process.
Meet Andrew Heim:
What is your name? Where are you from?
AH: My name is Andrew Heim, and I am from Easton, KS. It’s about an hour north of Kansas City.
What is your role in the MG community?
AH: I am a research project manager within the Neuromuscular Research Division at KUMC.
Can you describe your role?
AH: I help start up and run investigator-initiated clinical trials. This includes aiding the principal investigator in creating the protocol and obtaining regulatory and federal approvals to run the trials. It may also include preparing and submitting grant proposals or finding other ways to fund clinical trials. Once the trials are up and running, I project manage the trials to ensure they are run smoothly. This includes making sure everyone is trained properly, maintaining the budget, setting up vendors, and a multitude of other tasks. I often tell people that I do a lot of the work that happens behind the scenes of clinical research.
How long have you been in your role? What do you like about it?
AH: I have been at KUMC for over 6 years and in my role specifically for 4. What I like most about working with my team is that we are constantly trying to offer new, and hopefully better, therapies and treatments to patients that need better options than what is currently approved.
Prior to your role, had you ever heard of the disease, myasthenia gravis?
AH: No, I had not heard of MG until I started at KUMC.
How does myasthenia gravis research compare to other neuromuscular medicine research? Are there any differences?
AH: I think one thing that separates MG from the rest of our neuromuscular diseases is that MG can affect patients in so many different muscle groups. Many of our neuromuscular diseases have localized weakness to specific areas.
Are there any upcoming research projects related to MG that you could tell us about? If not, this has been an exciting time in MG research; how do you personally feel about the future of myasthenia gravis treatment?
AH: We have one of the biggest neuromuscular research teams in the country at KUMC, so we always have many research opportunities available for patients with MG. Since I’ve started at KUMC, we have been a part of approximately 40 MG trials. In the next few months, we hope to be recruiting subjects for a trial that uses a novel cancer-based therapy that has only been used in oncology research.
The MGA collaborates with research facilities like KU Medical Center to make patients aware of myasthenia gravis research. What have you learned as a result of being involved with the MGA/working with MG patients?
AH: The MGA provides a great service to both patients and providers alike. Something the MGA does well is establish and maintain a connection with providers and resources for MG patients so that they can connect patients with the resources they need, whether that be a support group, provider, or clinical trial. The MGA also does an outstanding job of raising awareness and funds to support the MG community.
If you could let MG patients/families know one thing about clinical research, what would it be? What is an important takeaway?
AH: Patients are truly the heroes of clinical research. Without their willingness and sacrifice to participate, we wouldn’t be able to advance medicine and continue to provide better therapies patients.
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