I get several monthly e-mails from MS-related organizations such as the National MS Society, MS Lifelines, WebMD, and Accelerated Cure. They all have sections listing Research Studies and Clinical Trials that are looking for participants. I always read these. I was born to be a human subject. I love filling out questionnaires. I just love it! I fill them out anywhere I can – on-line, in magazines. I even mail in those product registration cards that no one else returns just because I like to fill out the cards and color in the little circles.
I also don’t mind doctors, hospitals, or giving blood. I find it all so fascinating and base. Unfortunately, I never meet the requirements for research study participation. I am too old, or too young, and they frequently list “healthy” as a requirement. Once I saw a listing that was only open to “healthy smokers.” MS-related clinical trials usually require that you not be on any medication for the past 3 months, i.e. personally irresponsible sick people who are, however, just responsible enough to want to help out research.
I finally found one study, listed in the Accelerated Cure e-newsletter, that I qualified for. “Persons with a confirmed diagnosis of MS, Dysferlin Disorder, or TetraNoma to participate in a data and blood sample collection project for the purpose of creating a blood bank of 1,000+ samples to be made available to researchers studying MS and other related diseases.” Excellent! I am a person, I am diagnosed with MS, and I have lots of personal data … and blood. I called immediately.
The woman who took my called confirmed my eligibility, but also told me that only two days prior the Massachusetts study site had moved from the one about 2 miles from my home to one about 1 hour west. Well, I had waited long enough to be a human subject and I wasn’t going to wait any longer, so I signed up. I also signed my mother up who also happens to be “a person, diagnosed with …” etc.
The whole experience from beginning to end, with one exception, was wonderful in so many unexpected ways. I took a day off from work to go and pick up my mother, who uses a wheelchair, and drive out to Worcester, MA for our consecutive appointments. It was a beautiful, sunny day and I got some nice child- and husband-free time to just chat with my Mom. The study took place at a hospital, so everything was perfectly handicapped accessible, including parking right in front of the door. We were each interviewed and then given full neurological exams, and then they drew some blood. I had been asked to bring copies of all of my MRI results since diagnoses (6). The neurologist who did the physical exam went over each of the MRIs with me. It was the first time in 11 years of neurologists that I had a doctor thoroughly explain each MRI, and she compared each newer one to the priors as well. She saw me for about 40 minutes but gave me more information about my own MS than anyone ever had before.
Then there was a brief concluding interview and we were done. They also paid us each $25, so I tried to act like it was a bit of a burden. It felt very good to be able to do something so easy and yet so important to medical research. I think my Mom and I were both very aware of the charitable nature of our adventure, but mostly just having a nice day out of the house.
