NARCOMS

[doublevision1]

Has anyone here registered with NARCOMS?

I did so yesterday.  I wonder how useful it is though, given the questionnaire is self-administered, with no way of verifying the accuracy of the data.

It's not entirely clear to me how this data is used to further MS research.  It makes sense that a large database would be useful to detect patterns within the population.  I'm just suprised that the process for collecting data is not better controlled, ie: through MS clinics as opposed to self-administered online.

Is anyone else here registered and is the information you receive from them useful at all?

db

[Heather3418]

I have been a member of NARCOMS for over eight years.  While the Srping and Fall questionaire's can seem tedious, I am glad to offer my health data for them to continue in their research and watch over my progress or decline.  It is needed information for research.  I like their free magazine also.  It contains alot of advertising, but that's they only way they can offer the magazine and still keep their cost down.

The articles are very informative and it gives you the latest in research and studies being done.  So I say it's been a good thing for me to continue with.

Heather

[Momzilla]

Hi!

I am a research coordinator for a plastic surgeon.  One study we were involved in was structured in such a way that subjects (patients) could choose to report via phone (by a third party -- not doctor's office or study sponsor), via internet questionnaire, or by an interview with me, the study coordinator right at the doctor's office.

I think that reporting via internet gave patients lots of anonymity so they could be more honest.  Some of the questions were extremely personal, like abortion history, alcohol or drug abuse history...  

I think study sponsors know that some subjects aren't honest in reporting.  But this is the best they can do.  It's more controlled with a study like ours, since the sponsor knows these are indeed actual patients.  But, I think with an expected margin of error, this is not a bad way to collect data.

My humble opinion.

Z*

[sllowe]

I signed up on the website, and they send you a free mag.  It's very, very good info I find.  The most recent summer 08 newsletter had a good write up on Monoclonal antibodies and treatment.  They are hooked in w/the MS society.

I still do need to register as having MS though.

-SL