Hello from Rogier & Nobism project

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.

In Short

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.

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Hi Rogier,

Thanks for sharing your story, and it’s good to hear about your much-needed project and app. I’m sorry to hear about your cluster headaches, and hope your project and app can help you and others.

I develop statistical methods to start characterizing diagnoses and possible changeable triggers for chronic conditions. I’ve worked a little with a related condition (i.e., migraine headaches) before. If you’re interested in connecting, check out statsof1.org (where you can contact me, in addition to here). We’re also on twitter.com/statsof1.

Best,
Eric Jay

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Wow very nice to read the statsof1

I’ve contacted you through twitter, don’t know why…but i did :slight_smile:

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