Announcement

Collapse
No announcement yet.

Survey

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Survey

    I was just wondering how many people participate in the Narcoms spring and fall survey

    Every spring and fall I say i'm not taking the survey.
    To me it seems like the same questions every time

    I have been taking the survey for over 10 yrs

    Are they even coming close to finding a cause and cure for
    Shoo

    #2
    NARCOMS Survey

    I had never heard of NARCOMS until I googled it after reading your post. Now I know it is an acronym for North American Research Committee on Multiple Sclerosis. I have had MS for 10 years and do not recall having been solicited to complete their survey. Sorry.

    Comment


      #3
      I do and have been for about 6-7 years now. Narcoms is a database for closely watching the course of a person's disease for about 38,000 people now who have signed up for the use of research.

      You're right - for awhile it seemed questions were repetitive, but I've noticed recently there have been changes made - especially the addition of new drugs and treatments and alternatives. It has also given me insight as to how my course has progressed.

      Read about their goals here - http://narcoms.org/goals

      I;ve often thought that if everyone with MS signed up, there would be accurate numbers of pwMS and not the 400,000 that NMSS and others have been saying for years now!
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

      Comment


        #4
        I have participated for 10 years and always fund the studies published insightful.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          Never Been Contacted Either

          Wonder where their get their contact list.

          Comment


            #6
            Originally posted by its2much View Post
            Wonder where their get their contact list.
            Wonder the same, its2much? Had no clue, have never been contacted before, either.
            Kimba

            “When you change the way you look at things, the things you look at change.” ― Max Planck

            Comment


              #7
              I can't remember how I got signed up as it was so long ago, but if you go to http://narcoms.org/ there is a blue box to click to become a participant. It will then allow you to chose to become either an online or paper participant. I get my 6 month survey to fill out online through my email account.
              1st sx '89 Dx '99 w/RRMS - SP since 2010
              Administrator Message Boards/Moderator

              Comment


                #8
                I said I been doing surveys for over 10 yrs but I believe its over 20 yrs could that be possible

                My ms dr was the one who contacted them when he was looking for a medication for me The medicine was ACTH and for some reason it was hard to find it was so long ago this old brain gets a little foggy

                Everybody should sign up and take the survey, Seasha gave the information on where to find it

                Shoo
                Shoo

                Comment


                  #9
                  USUALLY

                  Usually, you are the one that has to make the initial contact. By clicking on that blue box. And, they have a phone survey along with a paper or online version.

                  So, make the contact today. They have gotten good information from the data they have collected.

                  I think some of the research on technology and MS is coming from this.
                  God Bless and have a good day, Mary

                  Comment


                    #10
                    I just read my answer and I didn't make sense

                    It was somewhere between 15 and 20 yrs ago when the ms dr contacted them about my medication and I have been taking surveys ever since then



                    Shoo
                    Shoo

                    Comment


                      #11
                      I've taken it for years.

                      It is really long and tedious, IMO. However, I figure if it will help somewhere down the road to know my year to year data...then it's worth doing.

                      Since I moved into SPMS and quit a DMD...it's much easier, you get to skip the MS med section.

                      Another reason I take it is because I get tired of the emails in my inbox...reminding me to take it

                      Comment

                      Working...
                      X