Clinical Trials are the backbone to emerging assessments and treatment for all kinds of conditions, including Myasthenia Gravis. Today I want to tell you about a clinical trial that I think is extremely worthwhile.
Amanda C. Guidon, MD, MPH, is currently conducting a study in conjunction with Massachusetts General Hospital on evaluating the feasibility of using wearable sensors and digital technologies to measure motor and speech function in adults with autoimmune Myasthenia Gravis who are seropositive for AChR Ab or MuSK antibodies.
Participants in the clinical trial will wear a pendant sensor for 7 days and then participate in an onsite examination using a tablet designed to evaluate weakness in MG. This study is focused on measuring the correlation of sensor-based measures of motor function. Currently, this is performed using questionnaires or observable measurements in your doctor’s office, but we all know the questionnaires can be subjective and symptoms we experience at home don’t always show up when we’re in the doctor’s office. This new study hopes to assist in developing and validating digital assessments of speech and facial expressions while you’re at home.
Why are digital assessments so important? Remember that Myasthenia Gravis is often called the “Snowflake Disease” in that symptoms may appear one minute and be gone the next. By the time you get in to see your doctor, the symptoms you were displaying at home may no longer be occurring. Digital assessments may help capture some of this data that your doctor may not otherwise be able to observe.
Think of it as wearing a heart monitor. When I’m having problems with an irregular heartbeat, my cardiologist will sometimes place a heart monitor on me that will monitor my heart rhythms over a period of time. Sometimes I have to wear it for 24 hours, but I’ve also had to wear the 7-day and the 30-day monitors. Capturing that data over an extended length of time allows my cardiologist to determine if I’m having any dangerous heart rhythms that he may not have caught while I was in the office. The sensor-based wearable device used in this MG study utilizes similar techniques, but for MG symptoms instead of heart rhythms.
If you are interested in reviewing or participating in this study, please go to this website: https://clinicaltrials.gov/study/NCT06277830?term=NCT06277830&rank=1
I’m not eligible for this study as I’m seronegative, but I reached out to Dr. Guidon thanking her for her research, congratulating her on this study and requesting that she keep me informed of any future clinical trials that would include seronegative MG patients.
I see this new technology as a wonderful opportunity to provide clear and concise data to our neurologists about the symptoms we’re experiencing. I wish I was able to participate, but hopefully there will be enough participants to validate the study and that they’ll be able to gain all the information they need to advance this type of technology.
I’ll keep you posted if I hear anything further.
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