Precision Medicine Program?

[Michael_67]

Hi Everybody,
I wanted to ask if anyone has participated in ALSTDI’s Precision Medicine Program? Basically, you track your symptoms each day. It seems like it could be a lot of work and not quite sure of the value. I guess you get a sense of how fast you’re progressing? But do I really want to know that /be reminded of it on a daily basis? If any of you have any experience/thoughts about this, would love to hear them. Take good care my PALS!

 

[Nikki J]

I did the phase 1 which was an in person visit followed by doing the trackers with the monthly exercises , phone call and online frs. the trackers were for a week every month. Because I was very slow progressing I didn’t learn much from the trackers for myself but that wasn’t my goal. My goal was to help science. It eventually became too burdensome psychologically and I dropped out. I did and do feel guilty about it but after 3 plus years I just couldn’t do it any more. They did feel they were getting good data and the goal of developing and validating an exercise tool is a good one. If you are also doing biomsamples they share your genetic testing results and eventually plan to use your cell line for testing drugs. I am FALS. I was able to designate someone to get those results if I am dead. Maybe that information will help my family as well as c9 PALS in general

 

[Michael_67]

Thanks for the info Nikki!

 

[GillG]

I participated for almost four years. I recently opted out of the study. It really is not a burden to keep up with. Just answering questionnaires occasionally and wearing sensors for one week a month. As said above , there is not really any personal benefit but I try to participate in as many studies as I can.

 

[RandomMom]

I participate in the study and have been since March. I visited the lab and was very impressed by everyone's dedication and commitment. I like feeling like I am part of the solution, even in a small way. I am progressing slowly, so the trackers and speech recordings are not really telling me anything yet.

One of the benefits, however, was that they tested my blood for genetic mutations. Since I am the first in my family to have this disease, I didn't expect to find anything, but it was nice to be pretty definitive with my siblings and children. One of the (minor) downsides is that the trackers draw some attention at work. Many of my co-workers know why I am wearing them, but I interact with new people a lot and prefer not to get into it with someone I just met. I just say I am part of a study. The study is flexible, though, so it is fine to not wear them during a part of the five days (or change your days) if it interferes with vacation, work event, etc.

 

[nona]

I did it for a year, maybe more, and my experience and withdrawal from the study were identical to Nikki's, above.

 

[COSister]

Kay and I both participated and were glad we did. Hard to watch her do those exercises and eventually she had to quit. We loved our trip to Boston though. Hoping we’re a small part of understanding this disease.