Researchers are on the fast track to discover a vaccine for COVID-19 but there are mixed opinions about expediting the clinical trial process. Will this compromise the safety and efficacy of the vaccine? Or will it allow Americans to get back to some sense of normalcy sooner rather than later? Skepticism aside, the current emphasis on clinical trials is stirring up conversation on the topic, inviting society to learn more about drug research and development.
When I was initially diagnosed with myasthenia gravis, there were opportunities for me to participate in clinical trials, however; I, like many people, chose not to enroll because of my misguided beliefs about them. After being involved in the patient advocacy world for more than 15 years, I now have a better understanding of the industry and how it operates.
According to ClinicalTrials.gov, there are 6 myasthenia gravis studies that are currently recruiting in Missouri and Kansas.* Myasthenia gravis research is at its peak, and to be able to have 6 studies in our own backyard speaks to their accessibility. I spoke to a fellow MG patient and member of the MGA family, Kelsey, who is currently taking part in a clinical trial. She stated:
“There’s a lot that goes into being in a clinical trial. It comes with a lot of freedoms but restrictions at the same time. It is wonderful and amazing to essentially donate your body to science while you’re still alive. It gives me a sense of fulfillment knowing that I’m doing my part in furthering research and treatments for MG. As for the restrictions…that’s more of the monthly visits. Though, that’s not too much different from a normal “MGer’s” life. The freedom comes with new treatments that are more convenient, portable, and time-saving. Also, there is some security in getting good treatment for free while it is being tested.”
I encourage you to join our next Monthly Virtual Meet-Up as our focus will be entirely on clinical trials. On Monday, September 21st from 6:30-7:30 pm, Angela Pontius will be leading this presentation. Angela is a clinical research professional with more than 13 years of experience working in clinical trial operations and patient advocacy. She gives an excellent presentation on the ins and outs of clinical trials; the different phases, the safety measures taken, and the benefits of enrolling in studies (to name a few).
If you wish to join, please RSVP to Tanya Renner at tanyarenner@mgakc.org by 9/21 at 12:00 PM.
Lastly, the MGA works with various representatives from clinical research studies to keep MG patients informed about relevant studies. You can find these studies on our website at http://www.mgakc.org/ and hover over the “Resources” tab to click on the “Clinical Trials” page.
*The following information was found on the ClinicalTrials.gov website. Search terms:
Myasthenia Gravis // United States // Missouri/Kansas/Arkansas // Filtered: Recruiting Studies
Currently, there aren’t any studies taking place in NW Arkansas, but we will continue to watch for and share them when they become available for that area.
#MGA #MyastheniaGravisAssociation #MGADigest #MGStrong #MyastheniaGravis #IHaveHeardOfMG #ChronicIllness #RareDisease #AutoimmuneDisease #NeuromuscularDisease #ClinicalTrials
This blog post was written by Meridith O'Connor, St. Louis Program Coordinator of the Myasthenia Gravis Association.