As patients together we have no options to conduct randomized clinical trails or other scientific research. Just because we are no specialists to do so.
We DO have the option to compare our own data and find the treatments that seem to have most effects, just by looking at the amount of attacks we have.
We already validate our treatments on individual level
Do you still remember when your first Cluster headaches started? The pain and tears? I went almost straight to a specialist for help.
He gave me a treatment and told me to come back in 2 weeks. I tried the treatment, went back and told him that I still had the same amount of attacks. So he gave me a new one. We went on until I found one that seemed to work.
I validated my treatments on personal level and found my best treatments to feel pain free. We all do this.
How to do research
By looking at the attacks of various patients, we hope to setup a model that can show who is doing better and who is not. So basically by looking at the attacks in the past and those you have now.
If we can find these points in our data we can ask the question, is this a natural development of a cluster or did the patient do something that could be responsible.
If we see a treatment that seems to lower the attacks, it will get a positive rating. Those that don’t seems to change anything or even seem to make it worse, will get a negative rating.
With enough members adding data, we can statistically show the effectiveness of our treatments.
With every new member, the outcome will improve.
Support for our own research
We need support for our own research. To get help we will setup various projects that can handle all we need to do research.
The Ubiqum project, who will be first to start, will support us creating the personal reports.
I’m working to find external research interested in using our data. Any development about that will be mentioned in the blog and on other pages on this website.
On technical level we are connecting to Open Humans to be able to share with external research.
“at the end, we only have our headaches to loose”