Join our group and cluster headache research by downloading the app and collecting data. (Android – iPhone)
Sign yourself in on the email list of nobism so we can inform you about developments
Share data with Ubiqum to receive your personal report and Join the Start of our patient driven research. (in progress)
Data can be collected with the Diary I have build. Its a smart diary you can use to keep track of things by pressing a button.
Its all about keeping track of symptoms and treatments and when the happen through time.
Because we are all unique, you can setup and collect the data that is important for you. You can also use it to keep track of other treatments or symptoms, not related to cluster headache
The diary works with buttons. Every button represents a symptom or a treatment. Just add the buttons you need to the app and press them when one of these items occurs.
Example is the Cluster headache button. I press it when my attack is over, add a duration and intensity and safe it. If I used oxygen or other abortive, I also press those buttons.
In treatment buttons, you can set a dose. If you do, you get no popup any more asking for a dose but the registration is made directly
What kind of data do you collect
Every time you press a button, a point in time is saved with the details of the button that is used. In my point of view this is the most detailed data we can collect because its shows exactly what attack patterns we have and how they relate to treatments.
I hope to add more options like our emotional state and possible validated questionnaires.
Other data sources
Open Humans gives the option to also collect data from other sources. At the moment its possible to get your Fitbit data , genetic or google location added to your Open Humans account.