Research update;


Cluster Headache Questionnaire: A New International Study

The response to participate has been outstanding so far, thank you. If you haven’t already done so, please consider participating in what will be the largest cluster headache study into important demographics. This study will provide important research data and help advance future research and advocacy. When the results are published and used to make a difference in how the cluster community is cared for and listened to in the future, make sure your voice is one that is making a difference. Advocating for yourself and others is only a click away.

If you have been diagnosed with Cluster Headaches and are at least 18 years old, you are invited to complete this important survey.  Completing this survey is an opportunity to help advocate for the entire international cluster headache community. The more participation we get, the louder our voice. Our advocacy work in Washington DC as well as within the medical community has identified important areas of research data that is required to make progress for the community but is currently lacking.

Please consider taking some time to help the entire community educate and advocate as well as make our collective voices be heard.

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Our study focuses on the following questions:

1.      Severity of pain
2.      Prevalence, severity, risk factors, and protective factors of suicide
3.      Personal burden (impact on relationships, work, and daily living)
4.      Effectiveness of treatment as well as obstacles
5.      Psychological impact

This study is a collaboration between Clusterbusters® and Larry Schor, PhD Professor of Psychology at the University of West Georgia

Note: Several years back, OUCH US and Dr. Rosen worked together to compile a very important research study similar to the one we currently have underway. The Rosen study has provided important data for many research projects since its publication. This has also provided a clear picture of what information and demographics still need to be collected to help advance further study.

If you can help us, please do.
Preliminary data will be presented at our Austin conference in September.

Thanks
Bob Wold

Completed questionnaire.
Thank you Bob for all the work you have been doing for sufferers everywhere.

Completed the questionnaire too and from the questions asked, I'm very interested in seeing the results, especially as it isn't simply a repeat of previous ones.

Completed the questionnaire

Mark

Hey, Bob. I think I completed the questionnaire previously. Are you able to see if I did so I don't double it up?

Thanks, mate,

B.

Done

Completed.

Brian, I went to the questionnaire and it said that I had already completed it.

Bob P wrote on Jul 16^th, 2016 at 8:17am:

Brian, I went to the questionnaire and it said that I had already completed it.

Thanks mate. Just tried it and it seems I haven't so will attack it as soon as I'm on a computer.

Doing it on a mobile isn't proving successful at all. I accidentally ticked childbirth and then things just got more confused.

Will have a beer instead and fix it all tomorra,

Brian.

Done.  I'd be very interested in the results too.

Thank you all for taking part in this so far.

When we get done it will help everyone in the community as the published results will be helpful in future research studies and I'm sure the results will be used in many advocacy projects and cited in articles to come.

You are all taking part in moving the understanding and treatment of our community forward.

You will all see the results when Dr. Schor publishes the results. We won't be closing the survey for quite some time as we collect all the data possible. Please spread the word about the survey.

Some of the questions have been specifically included to provide very important data that is needed to move other work forward and help us in our efforts to get the FDA, SSA & CMS as well as others, to improve the treatment of cluster sufferers and their families.

Taking part helps the entire community.

Bob

Bob P wrote on Jul 16^th, 2016 at 8:17am:

Brian, I went to the questionnaire and it said that I had already completed it.

what part of dumbass don't you get?

Completed. Hopefully we can see results.