I’m off today to go to Brussels and to attend the Cluster headache Awareness day 2019 in Brussels, organized bij the European Headache & Migraine Alliance
The Cluster Awareness day is Thursday 21th of March. The day before we will have a meeting in the European Parlaiment.
I’f I’m back I will try to give a resume about all that I’ve seen and heard.
My goal is to get our project known and show Europe we can do more than talk as patients and I hope to stimulate other European and National Headhache groups to join the initiative.
Collecting data is the way to find out what the effectiveness is of our treatments. This data can ONLY be collected by us as patients.
Only by all working together and by having our own data, we can create a change.
OpenHumans accepted my grant application to connect the application to their data storage platform. This way I hope to give every individual using the app the option to store and backup of the data. Its can also be used to share our data for research.
I’m personally very happy about this development and I see a lot of options that we gain by using the OpenHumans platform. We collect our own data about our attacks and treatments. But if you have an Fitbit smartwatch, you can also add the data to your profile and store it on OpenHumans.
Another nice option OpenHumans has is the connection with an app you can use to collect data about your location. The app is, like the nobism app, not connected to any server. Data you can store on OpenHumans.
What we as Cluster Headache patients can do with this is try to find out what influence the weather has on our attacks.
Data about attacks + Weather info of the location of attacks could give us insights about that.
OpenHumans has more options we can use to support our own research without for us the need to develop it on our own.
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.
I’ve just finished the reports of January 2019. Its was a lot of work this month because a lot of possible changes are happening and a lot of work needed to be done.
I share my personal report so you see how I’m doing, how reports are (now) setup.
We hope we will soon have our connection to Open Humans and a project setup by Ubiqum so we can get more knowledge out of our data.
In total we’ve collected over 17.300 datapoints. 1.300 more than last month.
Every time a member of our group presses a button in the diary, a new datapoint is generated about the button that is pressed.
We are collecting data already from July 2018 and we have collected already over 16.000 data-points about our attacks or our treatments.
We are now finishing the reports of January 2019 to send them to all the members that actually shared the data.
If you want to join our project, please download the nobism app for Android or iPhone and join our Mailing list so we can keep you updated about sharing data and other developments