Cluster headache community research

Hi I’m Rogier Koning and I’m a Cluster Headache patient. I’ve been very active in self tracking and I’ve setup a Cluster Headache community to own research in how effective our treatment are and how our attacks develop.

I have build a simple app to collect data about almost anything of symptoms or treatments. With my community we have collected over 27.000 datapoints. Over 12.000 individual attacks.

I work hard to find ways to use the data and visualize it. First I did it myself as patient using Tableau Software and others send me their data by mail. Now we have the data nicely stored on OpenHumans and did we have an Academy to help us with their student to generate some outcomes. But that stopped.

I’m looking now for a new way to get insight out of our data and I hope there are people here who could help out.

At the other side is our app setup to collect data about symptoms and treatments. Any! So those that want to use a journal and be able to store the data on Openhumans, take a look at our project.
I can add any symptom or treatment as label on a button to make a simple registration with Intensity, Duration, Dose of treatment.

Some images of things we have visualized already:

This lat one is a insight of amount of attacks per month and insight in how the intensity changes through time.

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Or when we individually have our attacks through the day: