We’ve just update the nobism website with new content and layout to improve the information listed on the website. The website is now less about “patient doing research” and more about our own Cluster Headache research.
New is the information about OpenHumans, a non-profit data storage platform that give the option to Researchers to create projects and request you data for research. For our project it means we don’t have to develop our own data storage or sharing platform to be able to store and share data in a good way.
OpenHumans accepted my application for a grant to connect the app with their platform and this way I will have the funding to do so. I’m already talking to the developers to get the connection build. I hope to get an update for the app soon.
Also new is information about Ubiqum, a code academy located in Madrid, Barcelone, Amsterdam and Berlin. They always look for real-world data for their student to work with and they like the idea of being able to help patients with their knowledge.
They will setup a first project on OpenHumans in the near future to help us build our personal reports (that I’ve been making in the last half year) and to try and find trends in our data.
For the Advocates among us:
Because the data will be stored on OpenHumans and any researcher can create a project on it to request the data.
This means you can advocate Research and Specialists that Cluster Headache data is available for research.
For the Moderators Among us:
his project is not setup to get everybody in one Facebook group about Cluster Headache research. This is setup so all can stay were they are while working together.
So motivate your members to colect data, inform them about project that are listed or new projects that are starting. Inform them they can also advocate by showing their specialists what we are doing.