I just saw some info on this new study for MS. It came out in Multiple Sclerosis News Today. I have requested more information because this sounds like something I can do! I don't have a smartphone, but I do have a tablet! I am definitely willing to share my MS info with the researchers. What do you all think of it? Would you share your info on an app?
Here is the link to the article.
The jury is still out on my part. Though I think having tons on information may be helpful in research, I admit that I worry a little about my personal information being "out there," with the potential of being being used in a way I would not agree with or which may potentially harm me. I know I sound like a paranoid person, but I'd have to investigate the storage and use of my data before agreeing to giving it away.
greaterexp I'm with you on this one. You never know when they info you share will come back to bite you. It's really sad that we have to be afraid of this, because I'm sure that each of us would like to help further MS research. I'm willing to donate my brain after I die. Anyone know of a program that may want it for MS research?
I think it is a good idea, but like Erin says, how secure will the information be. Someone has got my email and I am being inundated with emails offering me jobs and gift certificates. I trash them right away, but I would want to know that your information cannot be used by anyone. I have only learnt on MS news today. Someone very kindly sent me info on a ms garden here in the uk. Blessings Jimeka 🦋 🌈
I'm on the fence as Erin is. I believe that a breakthrough is more possible with more information but not sure about putting such personal information out in the wild. I would need to know more about how they plan to store it and what security precautions they are taking with such sensitive data. Too many hacks have happened because the security was lax. I also want to know more about who can access the data.
Do you all have copies of your MRI's? I don't though I could get them I suppose.
I am waiting to hear back about what is required and all the ins and outs of the information. I have participated in many studies and all of them have protected my info very well. "23 and Me" protects your information extremely well (the company that does the DNA/Genetic testing). I did receive an email stating they have gotten a very large response so far. It will take them a bit to get back to everyone with the information they have requested. Once I learn more I will pass the info on.
I do have all of my MRI's and all of my other test results all the way back to 1990. I also have a VERR comprehensive family health history going back to the mid-1800's on most of my family lines. I am a bit anal on this.
I'm quick to volunteer for research and give back to the medical community, but I'm not sure how they could keep things confidential.
I am already on a similar volunteer "research" with UCSF where I also go to the MS Clinic for my Dr. appts. I have confidence in their (UCSF) keeping my personal information private. I will have some MRI"S and testing, results kept confidential. I don't think I would want to put my info "out there."
Hi Bygonelines sounds like a good program! I wish they had given more info though! I would love to do the 23n me!! I could find out on adopted 😁 ugh!😅😅
I know my MS clinic is making me come in a half HR earlier now because they are doing the same thing though.. cognitive testing, balance, and vision and with me, walking with and without braces.😒 Just cause he hates me😠
Let us know what you find you!😊
Jes 🌠
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It WAS an interesting 2 days
