MS research project

[doublevision1]

Just wondering why the post regarding that student's request re: their research project was removed .... did it really violate the Terms of Use? Would like to just understand.

I completed the survey myself and sent the link to a friend. If anyone else would like it, I can PM the link to you. It was a few general questions about one's dx and what daily difficulties it causes, as well as questions re: what would make life easier.

Wishing this student all the best with their studies.

[Lulu54]

The terms of use are pretty clear about not posting surveys or doing polls that aren't using their tools.  There are lots of reasons why they don't allow them, many of which I'm not in step with but I don't run MedHelp.  

I have seen school children ask questions for school projects and get censored.  I have seen slick surveys get knocked off, so at least the policy is applied equally.

[SarahL2491]

I also reported it, I felt the forum was for patients to patients and like others, I felt it was inappropriate and obviously, the moderators did too.  

[immisceo]

I may have reported it too, *if* we're thinking of the same one. Properly conducted surveys tell you precisely who they are, what they're aims are, what will happen to the data, how to withdraw your data. The questions didn't seem like the real deal. At all. Perhaps it was a highschooler, middle-schooler? I've done countless inventories related to MS and you do not get questions like that. I tried to track down any of this information and wasn't satisfied. My impression was the questions were appallingly amateur and leading. (I neither screen capped nor saved the link, so I'm just reporting my initial reaction).

I've been a part of four properly conducted academic studies in addition to the drug study I'm on. I know the general protocol that has to be fulfilled for the ethics committee of the governing/underwriting academic body to be satisfied. What good is the data they'd get from a PUBLICLY available link to a random survey with leading questions? It'd be less than worthless because the data could be filthy. A five year old in Timbuktu could have answered.

These studies are generally conducted through the university, come with reams of disclaimers about how you can withdraw your data, etc. It majorly didn't pass the sniff test with me. It did feel more like a marketing survey (as per my recollection. We are targets for a lot of this stuff, so it's entirely possible I'm conflating two different experiences).

The studies I've been on have been, even those that simply involve questionnaires, are direct through the university or through contact with the MS Society. This is the proper way to go about this. Perhaps they had good intentions? But the original poster just seemed like a chancer.

[doublevision1]

I was just curious as to what rule it might have breached, as he wasn't selling anything nor asking for identifying personal info?

[supermum_ms]

I actually just reported it, so the moderators could decide if was ok or not, i personally thought it was a good thing but considering it's been removed, it must of breached terms of use, though exactly what i'm not sure but i can check if you'd like?

Cheers........JJ