Hi. I just joined the group. My name is Rogier Koning and I’m a Cluster headache patient active in self-research and community-research.
As patient I’ve developed my own app to collect my data. Others in my community use the same. We store our data on OpenHumans.
Together with the Ubiqum Code Academy and their students, we’ve setup a project on OpenHumans to try and get insight out of our data. Main goal is to understand how some of us obtain a Pain-free status and others are not and what this tells us about the effectiveness of our treatments.
My project is called nobism. Its setup for cluster headache patients like me but what we do can be done by any other group interested in setting up their own research.
Self research for everybody
The app is build to collect symptoms and treatments, its not about a particular disease. Data storage on OpenHumans is free for everybody to use. Ubiqum is willing to support any group and I’m advocatikng to get more specialists connected. But you could also get your own specialists involved if you have data as community.
If there are any questions, feel free to send me a message or respond here.