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Patient driven research


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Hi, everybody,

I'm a Dutch cluster headache Patient on a mission so see if we can do our own research about our cluster Headaches and I hope to get an American group joined as well.

Being a Patient, makes that we can't do any scientific research, I'm fully aware off that. Problem with scientific research is that it doesn't move into our direction because our voices are not strong enough and our experiences have not enough value.

But I think we already have some treatments that could have potential. The most known are the Vitamin D regimen of Batch and the use of Magic Mushrooms, LSD etc.

What we can do is collect data and look at it ourselves. The outcome can only be called a trend, but will show the road for solutions. But to know what is working, we first should know our differences and similarities


Phase 1:
We would like to generate a list of all our symptoms, to get more insight in our differences, attack patterns and relation to other symptoms.
We would like to generate a List of all treatments we do, regular and alternatives.

Phase 2:
We would like to see if we can find groups in symptom or treatment combinations.
We would like to see in what group we can find more symptoms dropping or rising, an indicator that we are doing well or that we are having a bad time.

Phase 3:
See if we extract trend about the best treatments offered.

How to do this:
I've build a smart patient diary that can be used and setup unique by anyone of us. It uses buttons to keep track of what you think is important to feel better. The buttons are stored in a library and can be added to the app by downloading them.
As cluster-heads this means we all have the button "Cluster Headaches". Most will also have "Oxygen" I personal also use the Magic Mushrooms, I have a neck-pain caused by the attacks and I keep track of my Coffee, Thea and Water consumption, just because I think it could be related.

This way we can all tell our individual story.

Every registration made is added as a timestamp to the history and Timeline of the app, so we are going to see the relation between individual items.

Data analytics:
I have a Spanish data Specialist (I'm Dutch but living in Spain) that is willing to analyze the data to see what trends we can filter out.

ONE year:
What I ask is a lot and my experiences until now tell me its going to be difficult. I'm looking for at least 50 American Cluster-heads that are will to keep the diary for one year. Within this year we will have various point that we can use to collect the data and extract the results. We will use the result to show the world what we are doing, hoping to generate interest and more patients joining us.

If your not living in the United States, just let me know if you want to join and maybe we can find more patients from your country

What kind of patient are we looking for:
We are looking for active patients, that want to change our healthcare and work together to find solutions. Patients that understand that our experiences are nice, but that know our data could change our position and help; us find solutions.

More information about the project can be found on: https://nobism.com
Demo: if you would like to try the demo app we've build to do the work, please send me and message
Whitepaper: If you want info about data security, who owns what and more detailed info on how I think we could change the world, please feel free to request my whitepaper

This is a 100% patient driven project from a patient who is really tired of all the pain. I hope you will help me push the car finding solutions supported by our own data.

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