The answer to this important question and others, can be provided by us. With every new treatment we try, we can improve our knowledge.
We have many questions. One that I heard many times is what the effect is of the weather on our attacks. Other questions could be what effect a treatment has on our attacks, do they go down, or up? How do others respond? Those are question we could answer together.
About: The project called nobism is setup by Rogier Koning as Cluster Headache patient.
“After trying many treatments, I still was in cycle not knowing what worked best and the attacks where extreme anyway. I tried to keep a diary about my attacks and treatments to understand them better, but my attacks are not always regular. Sometimes I thought a treatment worked, but the cycle just ended or lowered in attacks. In a new cycle I tried those treatments again without the same effect.
It took me years of suffering before I found a way out of this hell.
I always felt that my data compared to data from others from our community, could help us all to better understand these changes, patterns and to try and understand how to obtain a pain-free status.
I tried all I could to get our own community research going. At this moment I have the nobism app active that helped us to show what the importance is of communities that collect and analyze their own data.
With some close followers we have collected over 27.000 data-points, over 10.000 individual attacks. This is a good start but not enough yet to bring a serious change for our community and learn how we obtained our pain free status.
WHAT DO I FUND FOR:
A simple and safe way to collect and store data & to Build Community, so we can learn to know and become friends with the others. Improve our patient driven research to build our knowledge and battle our killing Cluster attacks!
We currently have a small group of very active Clusterheads using the nobism APP. This APP is developed by Rogier Koning. As a first setup this app worked to show what we can do if we have our own data. This app is up for a big renovation and improvement.
The first step we need to get funded is maintenance of the existing APP so we have funding to get rid of bugs or other technical problems.
Second step is to rebuild the app to improve how we collect and view our data, add a protected server to be able to have a fast and secured backup of our own data.
Research - Factory
Behind every question we have, an analysis is hidden to get the answer.
We’ll need to have an online platform for interaction between the community and research-analysts, to get their help in improving and getting more of our questions answered.
Step 3: build community where we can chat, look at our own research and share news that could be important to know.
Funding first will be used to maintain the current setup.
If enough funding is collected, improvements will be made.
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