Research study

[hall2]

Has anyone else signed up to the research study being done by Sanius health on the MPN Voice app? I’ve agreed they can look at my health data. I’m just interested to know how anyone else is getting on with it all?

[LittleLuna]

hi Hall2

I signed up at the start and its fine. Only thing you have to do really is answer standard daily questions on app about symptoms, how your feeling etc.

I have also started logging blood results and you can add meds. My understanding is that it is not a diagnostic tool but will help MPN Voice and Sanius in analysis of is MPN patients, supporting research and hopefully bring forth positives for us and future patients in years to come.

I also got the Withings Watch which is good but am also using my fitbit as one of faults is not tracking step count properly. One of things I do like to keep up on, especially on days where steps are low due to fatigue.

I would recommend it but you do have to commit to daily app questionnaires as key part of this research programme for 5 years

❤️😀

[hall2 in reply to LittleLuna]

Hi thanks for your reply. I’ve got the watch as well and I’m still sussing it out. I had an email about the daily updating of symptoms and so on I’m happy to help with research.

[LittleLuna in reply to hall2]

Great. Watch is good, not perfect but Sanius folk are great at responding if you need help at all.

Its worth it, go for it. You can also send/print health reports from Withings watch so handy if you find some issues coming up

[Lola367 in reply to LittleLuna]

Hi LittleLuna - Really interesting to hear you mention about the step count on the Sanius watch - I have noticed that in comparison to my FitBit, the step count is a LOT lower!! I use daily step count to access perks from my health insurance so have had to resort to wearing my FitBit as well which I link to my Vitality health insurance - bit of a pain wearing two- it's a shame Sanius can't address this...

[LittleLuna in reply to Lola367]

If you need count for health insurance maybe try wearing fit it too. I just wear one on each arm. I look silly, 🤪 but who cares.

[Lola367 in reply to LittleLuna]

Yes I do the same!! I don't mind looking silly either It's all in the name of steps!!! x

[Maggie-ol]

Yes, I signed up a few weeks ago but have heard nothing from them since

[Wally85 in reply to Maggie-ol]

I signed up too, and have given permissions to access my health data. I’ve nothing more for a few weeks.

[Mookat4]

Hi, I signed up too at the start. I find it really useful to have my symptoms and blood results all logged in the one place and if it provides a larger database of information for study/ research then so much the better. The watch is fine, rather large to wear and not particularly accurate, am finding I am doing loads of daily swimming and cycling despite not having a costume or a bike!!

[mark382]

Looked to sign up, but thought they wanted too much personal data and information was being collected by an individual company. Call me paranoid, but decided against signing up.

[hall2]

Thanks for all replies its intersting to see how everyone is getting on!

[Pippapot]

Yes I signed up from the beginning too. Interesting to see what others have said about the watch, mine doesn't count steps accurately either. It has also recorded my activity as riding a bike several times, I don't have a bike.Despite that, recording symptoms and blood results etc is very straightforward. I havnt heard from anybody since signing up.

[ArchieCatPurr]

Doing the same thing. No problem getting the data using the watch they supplied and using the app is very easy. The need to get my data from my GP and Haematologist has not arrived yet but they say it will be provided and processed on the app when needed. I find everything interesting and helpful to me and my daily life.

[Devilgirl]

I've also signed up & received the watch about 5 weeks ago. I have also found the activity tracker inaccurate but other smart watches have also been inaccurate on steps. I appear to go up stairs a lot more than I come down as well as going for bike rides but I don't possess a bike 😂I like the medical info in one place & have found I have some symptoms more frequently than I had realised.

I did have an issue with not being able to record my medication adherence for a couple of weeks but when I contacted Sanius they sorted it.

[hall2]

it’s all good to hear how everyone is getting on. I also use a phone app to record steps so it’s interesting to compare the both.

[RedCardRob]

Got the invite email Monday, thought about, signed up Wednesday, got the watch today Friday.Only pain setting up is having to dial back swiping 853 times for my date of birth!

Unlike others I haven't been for a bike ride or gone for a swim...yet😉...but I did do 1/2 mile filling up holes in our outside wall in prep for painting, seems a bit excessive. Can't wait for the next session of walking football!