Collect data
For Cluster Headache Community researchNext Steps
How to Get Involved.
start A
Download nobism app
step 1.
Collect data
Donate
start B
How to use it
step 2.
Store data – OpenHumans
Contact
.
.
step 3.
Share data for research
Ubiqum or other project
start A
Download nobism app
The nobism app is available for Android and iPhone and is free to download. Everything you collect with the app is 100% in your ownership this is called:
privacy by Design
This screen shows some personal buttons, watch the movie to see how to set it up.
Start B
How to use nobism
The diary of nobism is setup with buttons. These buttons you can press to collect data. We all have different ones, so you can setup the app for your personal use to tell your unique story.
Important: Make sure you also send a copy of your data to your own email address to have an extra backup of your data. You can also go to your OpenHumans account by browser and download your files from there.
On the History-page there is a button to email your data.
Step 1
Collect data
Once you know how the app works its time to collect data. If you had a Cluster headache attack, just press the button, add intensity and duration and safe it. The same for any other symptom you have or treatment you use.
An example of a cluster headache data collection showing a severe pattern of attacks over multiple years.
This movie shows how to connect your app with openHumans
Step 2
Store data on OpenHumans
OpenHumans is a non-profit data storage platform. You can create an account on OpenHumans and use it in the app to backup your data. OpenHumans also gives you the option to collect more data then only what’s collected with nobism. You could add your Fitbit, DNA, GPS or other data if you have it.
Step 3
Share data for research
Once you store data on OpenHumans, you can also share that data. At this moment we have 2 options to share inside the app itself.
The first option is to share your data with Ubiqum and receive a personal report every month. This report is still basic of setup but we hope to improve it on monthly base.
The second option is to share your report with nobism. nobism doesn’t receive anything from your data or reports. So the only way to show what we do as community, is having reports from individuals shared that we can show.
Share data with Ubiqum
Ubiqum Code Academy will create a monthly report and send it back to your OpenHumans account for download.
Share report with nobism
nobism doesn’t receive anything unless you share it with us. With this project you can share your Ubiqum report so it can be used for advocating. All images you see on this website are from people who shared.
Other projects
I’m working daily to get more project connected. If you have one that could help us analyze our data or use outcome for Advocating, please leave me a message
Docu: Cluster Headaches - Data to become pain free
A documentary with members from our Cluster Headache Community and some from the nobism project, about the value of patients collecting data and what it can do for a community