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patient Registry (Read 967 times)
Pinkfloyd
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patient Registry
Aug 16th, 2014 at 10:41pm
 
Hi Folks,
Sorry I don't get back here very often.

I'm coming back to the original cluster site.

Have you registered on the Clusterbusters “Patient Registry” yet?

Over the years, Clusterbusters has built a very large worldwide patient database. Become a member of the database and possibly a participant in a research project that will lead to better treatments and eventually a part of the cure.

By completing this form, you are not registering for a specific study that is underway or that will start in the future. You are not agreeing to become a participant in anything. You are only agreeing to the possibility of being contacted in the future to ask for your participation.

Research studies sometimes only require your participation from home. It may only require completing surveys or questionnaires. Some of you may have recently done this for the work underway at Yale University. Some clinical studies require your participation in other ways. Some may include travel. Each study has different requirements. Choice of participation is yours and that of the study investigators and does not involve Clusterbusters in any part of the process.

This registry is open for everyone. There are no requirements of past, present or future choice of treatments or any particular cluster headache or human traits.
People from all walks of life, all ages and every description, suffer from cluster headaches.

We are presently involved in several ongoing research projects as well as several others that are in the long process of approval.

As we are involved in research on an international basis, this survey is open to everyone worldwide. We encourage anyone with cluster headaches to respond and help inform others of its existence. As many studies focus on certain segments of the cluster population, episodics vs. chronics as an example, you may not be contacted for every study that is underway.

Be a part of a better future for cluster headache patients and participate in our registry.
As you will see again on the forms themselves, all of this information is and will remain completely private. The survey, all data and any and all future distribution is administered by the Clusterbuster’s Administrative panel and members of its medical advisory board.


Information and people will move the research forward. Please be a part of this. Just the completion of the questions on this short survey, by the thousands that are included, helps gather important information.
Please share this with others you may know that suffer from clusters. If you know of anyone that does not have access to a computer, contact us at info@clusterbusters.org and we will mail a written copy for completion and inclusion.

To participate, please go to this link:
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Some of the questions may give you an idea of some of the projects we are currently working on and there will also be more information available at this years conference.

Thank you
Bob Wold
Clusterbusters

P.S. Hope to see a lot of you at the conference in Nashville.
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"those who torment us for our own good will torment us without end, for they do so with the approval of their own conscience."
- C.S. Lewis
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Callico
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Re: patient Registry
Reply #1 - Aug 17th, 2014 at 7:17pm
 
Done.  I filled out something similar a few years ago.  Won't hurt to have it updated anyway.

jerry
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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)
Jerry Callison  
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dennisoc
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Re: patient Registry
Reply #2 - Sep 2nd, 2014 at 2:22pm
 
I think i did it...i may have done it...all i know is that i gave you guys shit for posting here about psychedelics stopping CH...What? when? over a decade ago....THEN....secretly growing shrooms..(yer not a true CHer till ya try everthing)...ingesting shrooms stopped my CH for that decade...there are no words deep enough to thank you and flash...i want to have yer babies.
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Wage Peace
dennisoc dennis o'connor  
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