Kelsey

After being diagnosed with MS in college, Kelsey has experienced migraines, fatigue, heat sensitivity, and urinary incontinence. Kelsey has participated in a few clinical trials. In one, she had to wear a smartwatch that attempted to validate whether the difference in activity measured by the smartwatch could be an indicator of a relapse. The purpose of this trial was to understand nuanced indications of relapses and develop more sensitive tools for detection. In this trial, Kelsey had to do a timed walk everyday with her husband who served as her control. She was tested on her fine motor skills by tracing outlines. Her doctor, who invited her to participate in the study, had access to the collected data. Kelsey also participated in a clinical trial that aimed to validate a measurement of cognitive ability which entailed two one-hour appointments where she did a “bunch of cognitive testing” with a research coordinator. She remembers getting an MRI for research though she does not remember if that was a separate study or tied to the smartwatch study.

Kelsey has never been invited to participate in an MS treatment trial. However, she would consider declining treatment trials as she is hesitant to put her disease course in the hands of a researcher. If she was offered an observational or validation trial, she would be happy to accommodate a demand on her time. If she was not feeling satisfied with her current treatment regimen, she would consider a clinical trial but at this current time, she is very happy and very stable on her MS medication. Her circumstances would have to change dramatically for her to consider going off her current treatment. The main motivation for Kelsey’s participation in clinical trials is a moral one; “it's really clear to me that I have a moral obligation to support any sort of science in MS because I'm benefiting from that work already.” Kelsey believes that “science gets a lot of credit for the fact that I can live a mostly normal life now.” Kelsey has a unique experience in that she works somewhat closely with the researchers and therefore, finds it can get a little awkward when she goes into the clinic, but she does not feel any concern around sharing her data with the research team.