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WHO’S BEHIND THIS?

Monitoring Meniere’s was created by Dr Jess Tyrrell of the European Centre for Environment and Human Health, University of Exeter Medical School and Buzz Interactive.

We want to better understand Meniere’s disease and what factors influence people’s symptoms. We also hope to investigate whether any patterns exist in symptom severity to see if people experience bad days on the same day.

We’d love to hear from you about the app or if you have any questions.

AM I ELIGIBLE?

To be eligible to participate in this research project you must be:

1)    Diagnosed with Ménière’s disease by your doctor

2)    Experienced Ménière’s symptoms (e.g. vertigo, tinnitus, aural fullness, hearing disability) within the last 12 months*Slide2

3)    Be over 18 years of age

4)    Have a smartphonev

5)    Consent for us to collect your location data using GPS.

*We only want to include participants who have experienced symptoms within the last year, because we wish to monitor people with active disease.

vTo participate in the research participants need to have a smartphone.

TELL ME MORE ABOUT THE APP

WHAT WILL I DO?

  • First, you’ll need to download the app to your iPhone or Android Phone.
  • You’ll provide some basic demographic and health-related information, and confirm some settings in order to sign up.
  • After that, you’ll receive a notification (beep) on your phone once a day. This will come at the time you agree at sign up.
  • The notification will prompt you to open the app, to briefly report how you’re feeling. You will be asked to record the severity of your tinnitus, vertigo, aural fullness and your current hearing status.  Please report an average of the last 24 hours. You are also asked if you have had an attack today.

HOW LONG WILL IT TAKE?

  • The sign-up process should take no more than 5 minutes. The daily reports on your symptoms will take about 30 seconds.
  • You can keep taking part in the study for as long (or short) a period as you want.

WHAT DATA WILL I BE SHARING?

  • When you sign up you will be asked to consent for us to take your GPS location when you send your data. You must consent to this to be part of the study as knowing your location is critical for our research.  The app will then use your phone’s GPS (sat-nav) to discover your approximate location.
  • When you finish responding, the app will send the answers and location data  to our secure data store.

WHAT WILL YOU DO WITH THIS DATA?

  • We’ll use it solely for our academic research.
  • We’ll apply statistical methods to the combined responses from everyone taking part. We’ll use the location data to estimate what the environment was like in the places where people responded. And we’ll be looking at the effect of this on people’s symptoms, while controlling for some other potential influences.
  • If you’re curious to see our findings, please come back to this site from time to time: we’ll be posting results here. We will also send a summary report to all participants at the end of the research. We also hope to present our findings in academic journals and at conferences, and to make sure policy-makers are aware of anything important.
  • In all cases, we’ll never report any individual’s responses—only information at the group level.

IS IT ANONYMOUS?

  • Yes. We won’t know who you are. We don’t ask for your name or for any other identifying information, and we don’t need your phone number to send notifications to your phone. In principle, given enough responses, it might be possible to identify you from your location data in conjunction with your month and year of birth, but we have no intention of using this data for this purpose.  We will only use the GPS data to link up to other databases to investigate the role of environmental factors in triggering symptom spikes.

WHAT IS THE BENEFIT OF GPS DATA?

  • We can utilise your hometown location to link our data with other environmental data to identify triggers. However, GPS provides us with a more accurate picture. For example if you went on holiday for 2 weeks to another location in the UK, by using the GPS we can ensure that the environmental data we link up is as accurate as possible.

IS IT CONFIDENTIAL?

  • Yes. We won’t disclose any of your information to any third party unless (1) we’re required to do so by law, or (2) we do so under a strict contractual agreement with other academic researchers, exclusively for the purpose of academic research at a recognised institution.

IS IT SECURE?

  • Yes. All communication between the app and our data store is over an SSL-encrypted connection, the same kind used for online banking and shopping. The data store is a firewalled and fully updated Linux server.

IS IT EASY TO GET OUT OF?

  • Yes. Taking part is completely voluntary. You can withdraw at any time and without giving a reason: just delete the app from your phone. You could also ask us to delete all your data from our data store.

HOW MUCH DATA DOES IT USE?

  • Not much. Responding to a notification generally uses as much data as sending a brief email (around 1KB).

WILL YOU TELL US ABOUT THE RESULTS?

  • Yes, we intend to post the results on this site. We will send you a notification to your phone letting you know that some results are available. You are also free to contact the research team at any point for an update (J.Tyrrell@exeter.ac.uk).

I HAVE ANOTHER QUESTION

Great, please get in touch.

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