Nobism is an initiative setup by Rogier Koning, a Dutch cluster headache patient, to support Patients, Patient-Leaders and Advocates. Goal is to get active, collect data and work together to find solutions by research.
His attacks started around 2007 and developed into chronic attacks very fast. Not 100% all year, he had a break from September to November-December with less attacks. Rest of the year was up and down from a few up to 8-9 attacks a day. and….No SLEEP
He’ve tried a lot of treatments, just like many of you reading this. He’ve tried medical treatments like oxygen, Sumatriptan. Also other things I could find to feel better like: Botox, Massages, Accupuncture, Drinking water every half hours, alternatives like MM, Cold, Heat, Breathing techniques and many more.
He always tried to change 1 thing at a time, so first stop and then start other.
To know something was effective or not, he looked at the amount of attacks he had. This means if a new treatment didn’t gave me less attacks, he would stop and try another. Its hard to find out something with Cluster Headaches, because they come and go. You never know if its the treatment causing the improvement or if its just your normal change of clusters.
This all brought him to the idea that if he would have data about my attacks and treatments, he could find out if attacks were getting less while changing treatments. Being able to compare these results with others and their data, could prove if it was a coincidence or a result of the treatment.
Thats when nobism started.
The goal of nobism is to setup our own patient driven research and help our advocates with the outcome to change our future. We as patients can collect unique, detailed data about the effectiveness of our treatments. We also have all the options available to understand the data we collect.
At this moment we have collected already a lot of data and every month we add a few thousend datapoints. Every month a “personal report” is made, for all those that shared data. We also try to include some output about group statistics. We are building this and every now and then the report will get an update to give more insight.
We also use the data to advocate. We don’t share data we but we announce we have it, to try and find research groups willing to help us with our research or interested in using the data to speed up theirs.
If a project is found, those collecting data can decide for themselves to share the data or not.
“at the end, we only have our headaches to loose”
We are a Cluster headache group collecting our own data, hoping our individual journeys will shine light on what our best treatment options are.
Our mission is to do whatever we can to find solution for our attacks and for those new patients in the future. Our believes are that our data contains also our solutions. To find solutions we should have our own research active and we should be able to share our data with those willing to help us finding solutions.
All done is 100% Patient driven. If you have interest joining our project please do. ONLY with enough fellow Clusterheads collecting data we can find the solutions we need.
You are 100% owner of your data and only you decide what research projects you like to support.
We will be creating research projects on Open Humans. These projects can be setup to do our own, or for external research.
We are actively advocating to get our own research up and going. A first start are the Personal reports of the data we collect.
We also hope to find external projects to share data, because they do the research we want.
Working together and Advocating
We are all divided in a lot of countries and a lot of groups. But we don’t have to be in one big group to be able to work together.
All can look at their results and those of everybody together
Results can also be used to support the advocacy work done all around the world.