So after the sorting out of a considerable amount of red tape, Canadians are finally able to participate in the NMO CIRCLES* Study in Canada!
Just before Christmas, I went out to UBC to meet with Katrina, who is the study supervisor so I could enrol. She arrived at our appointment with a binder that was about 3 inches thick, but she was quick to reassure me that there were huge sections of the paperwork we’d be able to skip over because a good portion of the information needed would be mined directly from my medical records. (I don’t envy the person who has to spend 2 weeks chasing down all those details!)
Katrina asked me a ton of questions about my medical and geographical history. Some of the questions were really interesting and some of them were just plain weird-one reminded me of those dreaded math word problems I hated as a kid. (Katrina assured me that they are removing that particular question from future versions of the study.) Once all the information was gathered, she walked me over to the lab where they drew 9 vials of blood. This is about 4 tablespoons or 58.5 ml, which less than you would donate to a typical blood drive and it didn’t hurt at all. (My lab tech was excellent!) From there, the blood they collected would be broken down into 40 individual containers. All blood samples are labelled with a unique code-identifying information like my name or personal health number are not included. The blood samples are shipped immediately to the biorepository lab in the eastern United States were they remain until researchers working with the Guthy-Jackson Foundation apply for samples to work with.
All in all, it took about 3 ½ hours for the entire process. Follow up appointments for the study will be shorter, as there should be less paperwork. While I was having my blood drawn, I learned that I am the first Canadian to have blood drawn for the CIRCLES Study in Canada! Cool!
I signed up for this study because this disease can leave us feeling pretty powerless. I think that one way we can counteract that feeling is by helping to further research, through our blood and medical information. It requires a bit of a time commitment, but I am making a conscious choice to take time out to help researchers learn more about NMO so they can search for a cure in the hope that someday none of us will have to endure losing our vision or mobility or to be fighting for our lives.
Currently, UBC is the only site in Canada enrolling NMO patients for the CIRCLES Study. If you are interested in participating in this study or would like more information, you can get in touch with Katrina McMullen at firstname.lastname@example.org or call 778-320-5038.
*The Collaborative International Research in Clinical and Longitudinal Experience for Neuromyelitis Optica (NMO) Studies