We are Drs. Jeremy Shefner and Seward Rutkove here to answer your questions about bringing research into the homes of ALS patients!

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A little bit about us—Dr. Jeremy Shefner has been working on ALS clinical trials for about 25 years, and has been caring for patients throughout that time. He has done a lot of work around improving outcome measures for ALS and developing new outcome measures for the disease. Dr. Seward Rutkove’s current research focuses on innovative techniques for the assessment of neuromuscular disease. He is a co-founder of Skulpt, Inc., a company commercializing muscle impedance tools for clinical care and consumer use.

We are co-principal investigators for a new study we call ALS AT HOME that follows ALS disease progression and collects data on a number of different “outcome measures”—tools for assessing how the disease is changing over time. This study is unique in the fact that it allows patients with ALS to participate in research from home. To accomplish this, we ship equipment straight to participants’ homes, and they are able to take outcome measures on their own and send the data to us over the internet for analysis. We are also asking for a number of healthy people to also participate so we can compare data.

There are two really cool features to this study. First, participants never have to go in to a hospital or clinic to be part of the study. This is really important for patients with ALS who have mobility problems or who might live too far from a clinic to get in for regular visits. We hope that this will help change the way ALS clinical trials are performed, and encourage more people to be able to participate in important research studies on the disease. Second, because people are taking measures at home, they are able to gather data much more frequently. In fact, for the first three months of the study we are asking participants to take their measures daily. This should give us a better look at how the disease affects the body on a day-to-day and week-to-week basis. You can check out our website and find out if you might be eligible for the study here: http://als-at-home.org/ So, if you have questions about ALS, remote research, or innovation in clinical trials…ask us anything!

">We are Drs. Jeremy Shefner and Seward Rutkove here to answer your questions about bringing research into the homes of ALS patients!