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Study Closing_ Last Chance

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Last Chance! One week to go before this study closes. This study which will be the largest study of cluster headache ever conducted and it's resulting data will be useful in future studies, advocacy and awareness for years to come.
 
Please take part if you haven't already and be part of history. This study closes on April 20th 2017.
 
Cluster Headache Questionnaire: A New International Study
Clusterbusters® is pleased to announce the final collection days of a very important research study:
 
 Study Title: Cluster Headache: Investigating severity of pain, suicidality, personal burden, access to effective treatment, and demographics among a large International survey sample.
 
  We are seeking respondents in the US and worldwide as our survey is translated into 10 languages.
 
If you have been diagnosed with Cluster Headaches and are at least 18 years old, you are cordially invited to complete this important survey. This study will provide important research data and help advance future research and advocacy.
 
Despite numerous descriptions in the literature suggesting Cluster Headache is among the most painful medical conditions, it has been difficult to measure and describe with precision the severity of the pain that occurs during an attack.
 
Our study focuses on the following questions:
Severity of pain
Prevalence, severity, risk factors, and protective factors of suicide
Personal burden (impact on relationships, work, and daily living)
Effectiveness of treatment as well as obstacles
Psychological impact
 
To access our survey please visit the following link: www.clusterheadache.center
 
 
This study is a collaboration between Clusterbusters® and Larry Schor, PhD Professor of Psychology at the University of West Georgia with additional support to the University of West Georgia generously provided by Autonomic Technologies™.

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I've done the survey. I do have my doubts about this setup (used in many surveys) because its only a registration of our experience and not actual time based data that will reveal relation between different items like medicine intake and attacks. It doesn't show either if a patient has more attacks at night or more during the day. It doesn't give any clue if a patient is really strict in taking their medicine on time or that the take their meds one day at 08:00, an other day at 11:00 or if they sometimes forget taking it for a day. 

I know I'm a bit of a stubborn (but not negative) person...or a lot :) But I think giving these researchers time based data and the option to follow us patients for a while "live" would give better insight than asking us about our experiences. These are always changed by time!!

 

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