The Hyperacusis Research Survey
This is your chance to participate! Over 300 hyperacusis sufferers have already completed the survey – more participants will improve the quality and accuracy of the data. An exciting paper has been published using this registry survey data contrasting pain and loudness hyperacusis. Read all about it here.
You can help researchers obtain better information on hyperacusis with this survey data. This comprehensive hyperacusis 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, such as pain levels, and investigation of the variability of hyperacusis based on challenges such as new noise exposures and related setbacks. The survey also attempts to uncover any possible connections to other medical conditions.
The survey was developed in conjunction with Sanford Research in Sioux Falls, S.D., 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 this link. 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.