As you all know, the MG community has been fortunate enough to witness research and drug development skyrocket. A major and primary part of these developments though is patient participation. Clinical trials can be intimidating, and moreover, navigating the clinical trials site can be even more daunting. Thus, I thought it would be worthwhile to walk you through navigating the clinical trials website. There, you can find all the information you most likely need to make an informed decision. Check out these steps below:
1) In your search engine, type: “clinical trials.” Click on: https://clinicaltrials.gov/ to be redirected to the clinical trials website. Or, simply type in the above URL address to go directly to the website.
2) The home page will contain an area where you can find particular studies according to the criteria you identify. For the most general list of myasthenia gravis studies, type in “myasthenia gravis” under the “Condition or disease” search. Click search.
3) This will take you to the information hub of all myasthenia gravis clinical trial studies. You can filter your studies based on various factors including, location, the status of recruitment, study phase, and other demographics. I often find people are interested in learning about trials that are closer to them, so I like to filter using the map tool. If you click the “On Map” tab, you will notice the studies that take place all around the world for your particular disease. In this case, myasthenia gravis. From there you can click the state you are interested in.
4) If location is not necessarily a factor, you can also find studies that are currently recruiting. Check the “recruiting” option and click “apply” to see the list of myasthenia gravis studies currently recruiting.
5) The search will generate a list and general information listed including: Study Title, Conditions, Interventions, and Locations.
6) Click a specific clinical trial. There you can find all the information you may need to educate yourself about a specific study. Some important information to consider is inclusion and exclusion criteria. Nevertheless, some of the information on the clinical trials website can be confusing for some who are not familiar with certain medical terms. If you scroll down the page, there should be a designated contact. Usually, this person is the study coordinator or director. If and when you contact them, they will be able to answer any questions you may have related to the study.
Clinical trials can be confusing, but they are an incredibly helpful resource for patients and future patients. If there is a specific myasthenia gravis study you are interested in, do not hesitate to reach out to us as well. We would be happy to help in any way that we can to support you in your treatment options.
The following blog post was written by Meridith O'Connor, St. Louis Program Coordinator of the Myasthenia Gravis Association.