Happy to announce we have setup a new website to explain what nobism is all about and what we do as Cluster Headache group to improve our future.
Cluster headache is a devastating headache syndrome. Its listed as one of the most sincere pains a humans being can have and is often referred to as Suicide headaches.
The main objectives of nobism are to collect the data needed to start our own research. We use the fact we have data to advocate.
The website gives now some basic insight in what we do, how you can collect & share data, how we use it to create personal reports and advocating to create more research opportunities.
We will use this channel to keep you updated about the progress we are making.
Projects we are working on now:
- We are connecting the app to Open Humans to create a secure data backup and to give specialists the option to create projects and request our data.
- We are talking to umbiqum, a code academy located in Spain, Netherland and Germany. They are interested in supporting us to visualize our data and help us understand it.
- Currently talks are going to get specialists connected to Open Humans. Paolo Rossi of the EMHA is already in our group, but we are also talking to others.
- On a monthly base edit all received data and create personal reports with it. The personal report is a visualization of the data you collected. Goal is to give better insight on the frequence, duration and intensity of attacks.