CIRCLES Study, Canada

circles

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!)

vials

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.

blood draw

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 katrina.mcmullen@ubc.ca or call 778-320-5038.

 

*The Collaborative International Research in Clinical and Longitudinal Experience for Neuromyelitis Optica (NMO) Studies

05
Jan 2015
POSTED BY Lelainia Lloyd
POSTED IN

NMO

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6 Comments

  1. Marc Macintyre

    Great news. It is truly about time. I live in Ontario and it would be great if we could get a study here also. I wonder if it was under the auspices of Dr Freedman at the Ottawa hospital if that would help?

    Comment by Marc Macintyre on January 6, 2015 at 7:30 pm

  2. Lelainia Lloyd

    I agree it would be great if it were available Canada wide. In time, I imagine it will be, but it only just got green lighted and off the ground at UBC. It’s early days yet!

    Comment by Lelainia Lloyd on January 6, 2015 at 9:13 pm

  3. DORINA

    bUNA ZIUA !

    sant DORINA ,din Romania / Europa ,,,poate CHRISTINE isi aminteste de mine ,,am comunicat anul trecut .

    Si eu am NMO , dar starea mea este grava….sant la pat …nu ma pot misca deloc…aici nu primesc tratament decat pentru dureri si spasticitate .

    Citesc des ce scrieti pe NMO Diaries .

    Ma bucur pentru voi si de tot ce scrieti .
    Va doresc multa sanatate .

    Dorina Amarandei ,,,Romania

    Comment by DORINA on January 22, 2015 at 12:49 pm

  4. Lelainia Lloyd

    Hi Dorina,
    So glad you are able to read our blog and find it helpful. Sorry that you are having pain and spasticity. I hope that your doctors can help you with that. Hang in there!

    Comment by Lelainia Lloyd on January 23, 2015 at 6:47 pm

  5. Dolce Little

    In November 2013 I was diagnosed with NMO at the. Ottawa Civic Hospital and am under the care of Dr. C. De Meulemeester. I would like to get in touch with Marc MacIntyre or anyone in the Ottawa vicinity or Montreal with this condition. I had some pretty scary things happen due to being on Prednisone and Imuran.
    Dolcelittle@mac.com
    613-523-1815

    Comment by Dolce Little on March 30, 2015 at 4:04 pm

  6. Lelainia Lloyd

    Hi Dolce,
    I let Mike know you were looking to get in touch with him. I hope you two were able to connect. Did you know you can also connect to the MS Society of Canada? They have taken NMO Patients in Canada under their wing and offer us the same support services as MS patients. It’s a wonderful resource and a very welcoming community. I am sorry you have had some bad side effects from your NMO treatments. I am very drug sensitive myself, so I know how scary that can be. I hope you are doing better now. Thank you for taking the time to reach out.

    Comment by Lelainia Lloyd on April 27, 2015 at 5:08 pm

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