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…