My name is Rogier Koning and I’ve created a documentary about our Cluster Headaches and how we try to use our data as community to try and find answers.
Its called: Cluster Headaches - the importance of data driven research
Hope it can inspire others or even get shared.
Here you can also find some examples of what we managed to collect and visualize alseady as group about our own condition. Now we try to work mainly on who we are as individual, how we change through time and how we are compared to others. Later we hope to reach a level where we can say something about treatment effectiveness based on our own data…
https://nobism.com/examples/
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Great to see this effort. The issue of mobile apps to facilitate collecting information for the OpenHumans community was raised in the flu online conversation yesterday. We need an open source code to rally around. The projects I have taken an interest are https://gadgetbridge.org/ and https://androidaps.readthedocs.io/en/latest/EN/index.html both open source both import wearable data and it is possible add functionality. On the closed code side we could encourage apps like https://www.zerofasting.com/ etc to open source their code, they do allow exporting of data. Jupyter Note book https://jupyter.org/ I think this is a good example of getting momentum around an open source collaborative approach to software.
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