I-Stop-Afib Study asks for Participation

[CDreamer]

I wondered if anyone else is using this App or has participated in the research?

I’ve followed them for a while through E-Health but it seems they are starting a cyber research programme on triggers for AF which I thought might interest some. It is US based but the research is worldwide

Warning:- As it is done through Eureka there is no information as to who is collecting this data and it does ask for your Mobile Phone no. info.eurekaplatform.org/

The email came from UCSF Health eHeart Study · 555 Mission Bay Blvd (South) · Suite 161 · San Francisco, CA 94158 · USA

health-eheartstudy.org/

This is from an email received today -

We’re conducting a new study focused on helping patients identify and eliminate their personal Afib triggers!

I-STOP-AFib is a study that will compare the effectiveness of testing potential AFib triggers vs. tracking AFib episode frequency and severity to improve quality of life for AFib patients.

We are looking for people who own a smartphone and have symptomatic atrial fibrillation that comes and goes with potential triggers to participate. Participation will last at least 3 months and will involve:

Daily tracking of the frequency and severity of your AFib episodes

Taking daily ECG tracings with an AliveCor Kardia device, which we will provide!

Testing self-identified potential AFib triggers (e.g. caffeine, exercise, alcohol)

I-STOP-AFib is a mobile study supported by the Eureka Research Platform and all study activities will be completed on your smartphone through the Eureka mobile app. Anyone who would like to participate or learn more can download the Eureka app.

[Music75]

Hi,

I am participating in this study. What questions do you have!

[CDreamer in reply to Music75]

I suppose because I am outside of US, I am somewhat cautious about how my data will be recorded, used and kept and if it will be recorded completely anonymous as I don’t know enough about US privacy law and how companies are able to use the data. The Kardia app does record a lot of personal information so already you have 3 companies involved.

Data Protection Legislation in UK/Europe strictly controls the use of this type of data.

Whilst I appreciate this is a groundbreaking type of study which could greatly advance knowledge of AF management - there is a sense of Big Brother.

I am also surprised at the very few replies to this post? I wonder what that indicates?

Hope it goes well for you and would be very interested in your experiences and learning - if you care to share.

Best wishes CD

[LindaDaisy]

So did they give you a Kardia

[Music75 in reply to LindaDaisy]

They did, use it every day.

[siouxbee19]

I have been doing this study for some time now. I actually enjoy it and feel like I benefit from it. Eureka is the research platform they use, the study is conducted by UCSF, all legitimate. Hope this helps!

[CDreamer in reply to siouxbee19]

That sounds really good and so glad it helps you.

The app itself didn’t get great review on the App Store. I have taken part in the E-Health Heart research but got a bit fed up with it so ducked out. I think if I had regular AF episodes I might have gone for it but I already have a Kardia and no longer (written with crossed fingers and toes) have regular AF and pretty much know my triggers.

But I do think it is a good idea and absolutely needed and I can’t think why not more widely embraced.

[Coco51]

I feel uneasy about participating in research when I know nothing about the body conducting it. When I have taken part in research studies in the past (e.g. for cancer research) I have had direct contact with the team and full information on the methods and aims of the research. Also about regulations covering use of the data. Am I over cautious?

[CDreamer in reply to Coco51]

No Janet - I think that was my feeling - hence my post. I really like the idea, not sure about the implementation. I am not sure how data is controlled in the US and is allowed to be used and as I said above, Kardia holds a lot of information so with telephone no, name for registration of the Kardia etc I think this will put a lot of people off - but if a body we knew and trusted applied the same research - then I think this would be extremely useful and I can see this being the way forward for personalised medicine.