The Hyperacusis Research Survey

[Tinnitus Talk]

From Hyperacusis Research:

For those with a diagnosis or self-diagnosis of hyperacusis and ear pain: Please take our survey!

This is your chance to participate in important research.
http://hyperacusisresearch.org/hyperacusis-research-survey/
http://hyperacusisresearch.org/hyperacusis-research-survey/

The survey will take approximately one hour. It 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.

We have designed this survey in conjunction with Sanford Research, which runs a rare-diseases registry.

You can find the link to the survey on the home page of our website at hyperacusisresearch.org, or at the link above.

Thank you to all participants!

 

[Frederico_23]

Yes. I think it is very important to take the survey and to show the world that this is a horrible condition that needs attention and research.

 

[wishingluck]

Don't know if this has been shown before, on the ATA website there's a link to signing up for a research study. I had started doing it but it's very in depth and will try again soon.

https://www.ata.org/news/news/do-you-have-hyperacusis

 

[lymebite]

The Hyperacusis Research survey does not yet have enough responses for the medical researchers to utilize the data. If you have hyperacusis, PLEASE PLEASE PLEASE complete the survey.

The survey is NOT short, it will take you about 60 minutes. There are approximately 80 questions, mostly multiple choice. The survey will NOT work well on a smartphone, you need a regular computer, and even then it is not overly user-friendly, it seems to work best with the Chrome browser (some have reported trouble with Safari).

BUT the survey is very important, and with enough responses it will enable medical researchers to use the information in seeking therapies for hyperacusis. So, PLEASE try to push through the technical issues and set aside some time for the survey. It ultimately will benefit you and everyone else with hyperacusis. Thank you!

Here is the link again:

http://hyperacusisresearch.org/hyperacusis-research-survey/

Also, if you tried last summer and had trouble and gave up, please try again now - apparently the interface bugs have been corrected and it should be a smoother experience.

 

[lapidus]

The Hyperacusis Research survey does not yet have enough responses for the medical researchers to utilize the data. If you have hyperacusis, PLEASE PLEASE PLEASE complete the survey.

The survey is NOT short, it will take you about 60 minutes. There are approximately 80 questions, mostly multiple choice. The survey will NOT work well on a smartphone, you need a regular computer, and even then it is not overly user-friendly, it seems to work best with the Chrome browser (some have reported trouble with Safari).

BUT the survey is very important, and with enough responses it will enable medical researchers to use the information in seeking therapies for hyperacusis. So, PLEASE try to push through the technical issues and set aside some time for the survey. It ultimately will benefit you and everyone else with hyperacusis. Thank you!

Here is the link again:

http://hyperacusisresearch.org/hyperacusis-research-survey/

Also, if you tried last summer and had trouble and gave up, please try again now - apparently the interface bugs have been corrected and it should be a smoother experience.

I've tried to do that survey several times and it doesn't work for me. And I use Chrome. If there are technical troubles with the survey (for more people than just me), no wonder they haven't enough responses.

 

[Mithrandir]

I did the survey yesterday. It was really easy, I was on safari. No problems, less than 30 minutes to do it & my english isn't my mother language.

 

[Sen]

When I click the link to register, I get this error:

 

[Mithrandir]

I don't have any problems.

https://cordsconnect.sanfordresearch.org/BayaPES/sf/screeningForm?id=SFSFL

 

[lapidus]

I followed Mithrandir's link and it worked for me now. I used Chrome again.

 

[Sen]

I get the same error when I follow that link.

 

[lymebite]

@Sen

Please contact Austin at CoRDS and let him know the error you are receiving. My survey worked fine but others who have had technical issues have reported that CoRDS is very responsive in helping sort out issues.

austin.letcher@sanfordhealth.org

 

[Sara_Bond]

Hi people,

The CoRDS survey does not have enough responses for medical researchers to use the data, so we urgently need to drive more completed records. We recognize the platform can be challenging, so it may take some effort to get responses from groups such as people here on this board who are suffering from H, but small steps will help.
If you are sure you have not completed it yet, start here:
http://hyperacusisresearch.org/hyperacusis-research-survey/
If you are not sure if you have completed it, you can log into CoRDS here and check your status:
https://cordsconnect.sanfordresearch.org/…/pp/participantLo…
It is a long survey and will take about 60 minutes, so allow some time.

Some people included me would like to make the light on a growing problem which is Hyperacusis and help researchers to collect datas in order to classify and understand the Hyperacusis process. H can be very isolating and painful. It would be great to have some help. We are the promoters of our disease, nobody cares if we don't move on. So please everyone with H, go ahead and complete the survey!

Thank you!

 

[Foncky]

Thank you for the reminder. It's not too long to answer and quite interesting. Makes us think about our present condition.

 

[lapidus]

It doesn't take 60 minutes. More like 30.

 

[Mithrandir]

https://cordsconnect.sanfordresearch.org/BayaPES/sf/screeningForm?id=SFSFL


@demi
@kmohoruk
@quietatnight
@gary
@Tom Cnyc
@Vaba
@DebInAustralia
@Sen
@hartje5
@valeri
@Eliot333
@Ring Ding
@Karel
@Telis
@annabel16
@jross7
@Nonna

 

[Vaba]

https://cordsconnect.sanfordresearch.org/BayaPES/sf/screeningForm?id=SFSFL


@demi
@kmohoruk
@quietatnight
@gary
@Tom Cnyc
@Vaba
@DebInAustralia
@Sen
@hartje5
@valeri
@Eliot333
@Ring Ding
@Karel
@Telis
@annabel16
@jross7
@Nonna

I don't have H or ear pain, just one-sided numbness

 

[Mithrandir]

Please fill the survey, it's important to heal !

 

[lymebite]

The number of survey responses is up to 124, which is about double from just a few weeks ago. So people are completing the survey slowly but surely.

If you have significant Hyperacusis and have not yet completed the survey, please do so. It may make a real difference. The more responses, the more likely medical researchers will be able to use the data in seeking therapies and cures for Hyperacusis.