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kdevore

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Posts: 29
Reply with quote  #1 

Hello All,

As a hyperacusis suffer for almost 20 years, I am excited to learn that Sanford Research is conducting a new hyperacusis survey which will allow researchers to obtain better information on hyperacusis in the form of survey data. The survey that will provide researchers with a fundamental understanding of what hyperacusis is really like and will reveal common themes to help understand the mechanisms of hyperacusis. While prior surveys have helped to uncover the significant life impact, usually associated with hyperacusis, this survey is focused more on detailed symptom descriptions and investigation of the variability of hyperacusis based on common challenges such as new noise exposures and related setbacks. The survey also attempts to uncover any possible connections to other medical conditions.

Sanford Research in Sioux Falls, S.D., is a nonprofit research institution that runs the Coordination of Rare Diseases at Sanford (CoRDS) Registry. Sanford Research has a safe and secure patient registry for all rare diseases. More data means more knowledge, which means faster progress toward a cure.

The Sanford CoRDS survey process will consist of the following steps.
1. Complete your initial screening form by clicking 
https://cordsconnect.sanfordresearch.org/BayaPES/sf/screeningForm?id=SFSFL
In the Diagnosis section, enter “hyperacusis” in the box for your “Rare Disease Diagnosis.”
2. Sanford CoRDS personnel will send you your login information via email for their secure web portal.
3. Utilize your new login information to take the survey. The survey will take approximately one hour to complete and can be completed in multiple sessions. Gathering your personal medical files, especially any audiometric test results, will enhance your ability to complete all of the survey in a timely manner.

Thanks to all those who participate!

Ken


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Ken Devore
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Paulbe

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Posts: 176
Reply with quote  #2 
About time.  A survey that doesn't just focus on how upsetting it all is.  Must be the first.
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remember

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Posts: 85
Reply with quote  #3 

I just filled screening form and I had to done it by using mozilla firefox browser. Opera version 31.0.1889.99 that I normally use was not working with that form. So if you have problems try other browser.

  

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remember

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Posts: 85
Reply with quote  #4 
I just completed this survey and it made good impression to me. I hope that everyone of here does that survey[smile] We don't have afford to be indifferent when researchers asks our help. 
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remember

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Posts: 85
Reply with quote  #5 
For your information, the deadline of this survey is 30. September. 
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frederico23

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Posts: 1
Reply with quote  #6 
Very important that all Hyperacusis Suffers respond to this query. It's important for them to see there are a lot of us suffering (market for drugs and better therapies) so they can advance to put money for further research.
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remember

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Posts: 85
Reply with quote  #7 
The answering time has been extended. If you have not done it yet, do it now. 
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remember

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Posts: 85
Reply with quote  #8 
They still need more answers to this survey. Everyone on this board should do it. 
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dpellerin

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Posts: 778
Reply with quote  #9 
The survey is still accepting new respondents as of 19/11/2015
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