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What’s the Deal with Ataxia Research Right Now?

Guest Author: Tasha Kaiser, Clinical Research Coordinator, University of Michigan

Hello, with a big friendly wave of the Michigan mitten! My name is Tasha Kaiser, and I am the Clinical Research Coordinator for the University of Michigan Ataxia studies. I know that so many of you in the Ataxia community have unrelenting questions about the current status of research and how the COVID-19 restrictions impact it, so I wanted to share some enlightenment on the subject and hopefully take some of that edge off for you! But first, I want to say a few things:

  • YOUR SAEFTEY IS OUR NUMBER ONE CONCERN! – While the research coordinators miss seeing you in person, we want to make sure that we are doing everything we can to keep you safe and healthy! Unfortunately, that means making sure you can do most things from the comfort of your home (like virtual visits) and away from areas that would increase your exposure!
  • We are here for you if you need anything! – It’s during difficult times like these that you may find yourself in a place that is not good for your well-being. This is normal but important to recognize. Please reach out for assistance in alleviating whatever ails you and know we are here to help. We have an abundance of resources to fit almost any need and are just a phone call or email away!

Ataxia Research During COVID

Now, the good stuff! Here is what is going on with research:

  • Research IS still open and ongoing! While most interventional trials are now doing remote visits and most observational studies have paused, the research teams are still working hard behind the scenes. We are taking the opportunity to make sure all of our studies are in pristine shape and making preparations to get all participants back in as soon as we can!
  • We would love to at least do a virtual visit for all studies, but we have decided that it’s better to pause the observational studies until we can see you in person. The research on Ataxia is so precious, and to ensure that we collect the best data we know that completing certain study assessments in person is the most accurate way to do so. So please do not think observational studies are any less important just because they are not having virtual visits!
  • Your study team might have reached out to you, but if they have not don’t hesitate to contact them with your questions! This has been a big learning curve for everyone, and most of us have had to adjust to working remotely. We do not mean for it to seem as if we have forgotten about anyone, but we may get wrapped up in making sure we manage these changes properly! So please contact your coordinator if you have any questions or concerns!
    At this time everything is dynamic and we are just going with the flow as best we can. We are doing everything in our power to plug along and prepare for what lies ahead. I wish I could say we knew, but we must be ready to adjust if changes occur, which they very well may. I like to think that these changes will be for the betterment and that one positive outcome of this pandemic is that it will make research more resilient! We need to stay strong, stay positive, and stay together!

Lastly, I just want to remind everyone that each state is different regarding restrictions, and that they vary from institution to institution. Some research sites may be able to see participants before others and it is vital to be patient with the process of reopening! Again, safety is our number one concern and we strongly encourage everyone to follow the guidelines of the CDC and state officials! But please know that you can reach out to us at any time- we would love to hear from you as we too are missing the social interaction!

About the Author

Tasha Kaiser
Clinical Research Coordinator

University of Michigan Medicine
Neurology Clinical Trials Organization
Ann Arbor, MI

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