Flywheel MS?

[greaterexp]

I was sent a link to connect with clinical trials for MS, and then it linked to "FlywheelMS." Then it linked to "PicnicHealth," a site which is supposed to collect all of your medical records, put them into one place for you to access and for Flywheel MS to access after supposedly removing all of your identifying information. This is supposed to enable researchers to use your information, but it doesn't seem to spell out clearly just who will have access to your information.

Is anyone aware of these organizations or has anyone signed up with them?

[Peruzzot]

I've never heard of it and I would be really suspicious of it. It had you bounce around a lot and doesn't give specific information as to who controls the information, how it is secured, or how it is handled other than for researchers to use...but for what??

[greaterexp in reply to Peruzzot]

I didn’t sign up. It may be on the level, but I don’t want my information available to just anyone. I think I would be okay with sharing some information with very select physicians in clinical trials, but would need to know they are legitimate and know how my information is being handled.

[mrsmike9 in reply to Peruzzot]

I agree. It may be someone who wants to steal your identity. Tread carefully.

[Hidden]

I remember seeing something like that on Facebook but I don't remember the name. If I was interested, I would as my neurologist about it. If it's legit, they should know.

[jeffsgirl]

I've asked my MS nurse at my neuro's office about these sites and she advised me not to give them my information

[kdali]

I have not and will not. I released my info to Mother to Baby and there was so much signing and crap to keep up with later (I’m not driving back down to my pediatrician to get her to sign forms for my kids medical records 2 weeks after I was just there, etc) so I quit. This was a legit research study for pregnancies with Avonex exposures and I was in the control group.

[carolek572 CommunityAmbassador]

I did sign up and participate in such a thing but it is through my neurologist's office.

[rjoneslaw]

I don't sign up or participate in clinical trails that ask for my DNA or data on my medical history. You never know who is going to have access to it and how it would be used.

[greaterexp in reply to rjoneslaw]

Well said.

[arkies]

I have received information on FlyWheel as well and initially I was interested. Until I realized that they wanted me to release full access of my medical records to them. Not at all comfortable with that! I have nothing to hide, but there needs to be a certain degree of privacy in this world and medical records are one of those areas.

[greaterexp in reply to arkies]

I agree!