Initiative by: Rogier Koning
Data Analizing: Boje NIelsen – Denmark

Supported by:
steungroep clusterhoofdpijn (netherlands)
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Starting date: July 2018

This is the first Patient Driven Research done by Cluster Headache patients. We hope to start in Juli 2018. This research is based on real time data members of this group collect about their attacks, other symptoms and all treatments we do.

Our first objectives are:
– To create a complete list of Diagnoses or combinations we have
– To create a complete list of symptoms and combinations we have
– To create a complete list of treatments and combinations we have
– To find symptom patterns about intensity, duration and frequency
– To look for patients that show an increase or decrease in symptom registrations
– To compare symptoms and treatments to find trends about best treatments

 

Suggested options:

– External Weather info
– Body temperature
– Sleep sensor (Pavia Anderson)
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All can JOIN, you don’t need to be in cycle right now. Data that you are in remission and doing fine, can also show a lot of information.

We use the Smart Patient Diary build by nobism.com to keep track of all we feel and do, our symptoms and all our treatments. DATA is ONLY used within the group to find the information, answers and trends.

Our research is NO scientific proof. That’s why we call the results TRENDS. Trends can give insight to best practices and can be used to support scientific research.

If you join our group, make sure you get also join our mailing list to be sure you stay updated. >>>

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WHY JOIN?

By joining nobism you show us your appreciation and support for our initiative. That you would like to see the patient in the center of our healthcare system. And you like the idea that we could speed up research with our information. All on voluntary base and with the patient in control.