Dina
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In her early 20s, Dina began to experience early symptoms of MS which included transverse myelitis and a pins and needles sensation in her feet and eventually hips. A brain, cervical, and thoracic MRI found no evidence of illness and her doctor suggested rest. Several years later, Dina experienced pins and needs in her hand for the first time after the loss of her father and a beloved professor. At 26 years old, at the recommendation of her doctor, Dina received a lumbar puncture, and she was diagnosed with MS.
Dina has participated in several observational studies about MS. Dina’s first research experience involved wearing an activity monitor for three days and logging her activities to understand daily activities and MS. Dina’s second research experience involved a “giant math test,” cognitive function tests, pen test, and motor tasks for her hands. Her most recent study participation involved working with her disease, engaging in resilience tasks, and participating in phone interviews. Dina has also participated in an Accelerated Cure Project that examines a potential genetic component of MS. In this study, Dina and her mother provided blood samples. The study team also tracked Dina’s clinical progress for a couple of years. Though this study was a significant time commitment, Dina felt strongly that having more people participating in studies and sharing their biological samples and information would allow researchers to expand on current research.
Dina has not participated in any medication clinical trials because she has been pretty happy with her Avonex treatment and had no real incentive to try another. Due to her biology background, Dina is always interested in research and seeks out studies through the National MS Society website, flyers at her doctor’s office, and magazines that promote clinical trials and MS research. Dina’s motivation for participating in studies relates to the importance of research and science; “I think research and science is really, really important.” She wants to be part of that process, regardless of compensation, as long as it’s not too much inconvenience. If the study pertains to where she is in her MS journey, where she’s been, or where she sees herself in the future, Dina is willing to participate. Her decision-making process for clinical trial participation consists of the central question: “how is the research going to be helping?”
Dina describes her many reasons for taking part in studies.
Dina describes her many reasons for taking part in studies.
Because I think research and science is really, really important, and even more important now that it is—I want to be part of that process, regardless of compensation, as long as it's not too much inconvenience. You know, I wouldn't want to travel in and out of a major city and not be compensated. But as long as the study feels like it pertains to where I'm at and where I've been and where I see myself with my medication, I look to that as how is the research going to be helping?
Dina helps with research without needing compensation, as long as it’s not too inconvenient.
Dina helps with research without needing compensation, as long as it’s not too inconvenient.
Because I think research and science is really, really important, and even more important now that it is-- I want to be part of that process, regardless of compensation, as long as it's not too much inconvenience. You know, I wouldn't want to travel in and out of a major city and not be compensated. But as long as the study feels like it pertains to where I'm at and where I've been and where I see myself with my medication, I look to that as how is the research going to be helping?
Dina wants to help researchers get good data.
Dina wants to help researchers get good data.
So that was a huge one, and I was not compensated for that, but it was a lot of time. But I felt really strongly because I think one of the challenges a lot of researchers experience is not having access to good data. And the more people that are providing samples, whether it's physical samples or information like this interview, and so forth, that gives other researchers the tools that they may need to decide on what kind of research, or to expand on research, and I feel very strongly about that.
Dina says it is important that trials have input from diverse people.
Dina says it is important that trials have input from diverse people.
If they were comfortable to wholeheartedly participate, because it's the only way we continue to allow researchers options for what kind of research they can do, and have a larger sampling, because my experience and my background and who I am as a physical individual, as an entity, is very different than another person. So, having that input, I think, is really valuable.