Last updated: September 2023
Everyone has a spot in research for multiple sclerosis and I want to encourage you to find yours. It wasn’t so long ago that I was diagnosed with MS, and I thought of one thing when MS research was mentioned – that it was helping to develop new drugs. Since that time, I have been reminded over and over that there is so much more to research than just drug development.
The big ask: Clinical trial participation
Drug trials typically require a lot of the participants to satisfy regulatory agencies, such as the Federal Drug Administration (FDA). I am always grateful for people who participate in the clinical trial studies of new drugs for MS, whether it is disease modifying treatments (DMTs) or something to treat our various symptoms.
To participate in these clinical trials, participants typically have to meet rigid selection criteria and conditions of the trial. These conditions can include specific age ranges, types of MS, and length of time having lived with this disease. The study sponsor must adhere to the very specific selection criteria for the purpose of proving the effectiveness of their drug. There will also likely be a regimen of dosing and clinic visits that the person with MS will have to follow.
Participating in a clinical trial for drugs is a very big ask! Helping with clinical trials is not for everyone, and to those of you who have done one or more, we are very grateful for your willingness to advance MS research. We wouldn’t have all the treatment options available today if it weren’t for volunteers.
Learn more about clinical trials
If you want to know more, please read Clinical Trials 101: Your Guide to MS and Clinical Research. Ongoing clinical trials that are enrolling people in the US and abroad are listed on the official government site, The National Institute of Health's, Clinical Trials page, where you can search trials by condition.
An equally important ask: Other types of research
For a variety of reasons, participating in a clinical trial is not for everyone, yet there are still ways to help advance MS research that we can participate in from the comfort of our homes.
You may have noticed the invitations from MultipleSclerosis.net to help with the ongoing MS In America Survey that is sponsored by Health Union. It is a study designed to better understand how living with MS affects us and our quality of life (QOL) and activities of daily living (ADL). Health Union also offers other studies throughout the year that we can participate in, that don’t involve a clinical trial.
The National MS Society research
The National MS Society regularly emails links to studies researching ADL and QOL for people affected by MS, and you can find an entire section devoted to research on their website.
I am actively involved as a participant researcher for iConquerMS, where we have conducted studies on the cost and access ease of MS care, COVID-19's effect on people with MS, and vaccination and DMT interactions. There are sections on their website where participants can suggest their own research questions to consider and where you can view a list of current and completed research projects. iConquerMS also conducts research for caregivers of people with MS and has recently started a pediatric group called 'Kids and Teens', to better understand that group's specific needs.
The importance of research participation
These are just a few examples of non-drug studies. Some may take only a few minutes to complete an online survey, while others may ask you to spend more time completing multiple surveys to form a complete picture of how your life is affected by MS.
The results of these studies can help researchers and clinicians find better ways to help us cope with activities of daily living and quality of life issues. While we all wait for the cure for MS, these studies are every bit as important as drug trials because they help to improve our lives with MS.
Everyone can help
No matter what your situation might be, there are many ways to help advance research for MS. You can talk with your clinician about other opportunities for helping with MS research. I’m happy to answer questions or direct you to resources where you can learn more ways to help advance research and what we know about life with MS.
Wishing you well,
Have any of the following helped to reduce your pain? Select all that apply.