Tuesday, September 1, 2015

7 great things accomplished by patient powered iConquerMS

I am so delighted to share that the iConquerMS initiative has made a lot of progress these last few months. Membership keeps rising and a lot has been achieved in a short time. What a great team to be a part of!

The focus continues to be facilitating research on stuff that matters most to us, folks living with Multiple Sclerosis. And, it involves MSers across the entire process: idea building, collaboration, protocol development, project results, and sharing of final research results.  Pretty cool, right?


So, I thought I would share some of the recent highlights. Here are seven great things accomplished by iConquerMS so far:
  1. Launched the new data collection and patient engagement portal
  2. Registered over 2,250 people living with Multiple Sclerosis
  3. Collected a lot of health data – from about ½ of those registered
  4. Garnered support from MS clinics, neurologists, MS nurses, MS advocacy organizations, pharmaceutical companies, and collaborators
  5.  Created its first research project that will focus on how folks with MS get insurance coverage
  6. Collaborated with PPRN (patient powered research network) on a study proposal to examine the effects of depression, anxiety, and other mental health issues in folks with Multiple Sclerosis
  7. Planned four ‘Research Studios’ events, which will bring together small groups of MSers and researchers to brainstorm on research topics. These are scheduled to launch this fall 
Of course that’s not all as the full list of accomplishments is much longer. Also, several research projects are underway, all at different stages of planning and ideas keep coming in from those MSers registered - teams are very busy!

iConquerMS puts people with Multiple Sclerosis at the center of research in the fight against MS. We’d love for you to be a part of this so please join us today by clicking on the link here: https://www.iconquerms.org .

Take care,

Christie

4 comments:

  1. Hi Christie, it's really exciting to read about this initiative, this sounds like it could really help to gather powerful data that will lead us further along the path to a cure for MS. I am doing some work for the shift.ms website, which is a British website for people with MS that creates a social network between us.

    They have a project called the 'MS Reporters project', where they train people with MS to become 'citizen journalists' and conduct interviews with MS experts about issues raised by people with MS. They then publish videos of these interviews to their website here: http://shift.ms/msreporters/ so we can all share in the learning. It would be great if you could raise awareness of the project to spread the knowledge even further - and people can submit more questions to be asked through the website, too!

    Take care,
    Rachel

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    Replies
    1. Hey Rachel - I would love to help raise awareness about the 'MS Reporters' project (I love what shiftms does!). Stay tuned as I will craft either a few Tweets or a post here on the blog. Best, Christie

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  2. Thanks for this I'll check it out. My mom has had MS for quite a long time and in always looking into it in hopes to help her get more out of her days. Thanks again.

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    Replies
    1. Thanks Nathan. We are really looking forward to all of the great things that will come out of the initiative. Take care and thanks for stopping by the blog. Best to your mom. -Christie

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