We all search for treatments to get rid of those killing attacks. We try all we can find to feel better.
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. [more info]
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. [more info]
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.
This project is setup by Rogier Koning. A Dutch clusterhead living in Spain. [more info]