Misophonia Research Pool Participant Volunteer Agreement
What is the soQuiet Misophonia Research Pool?
The soQuiet Misophonia Research Pool is a centralized tool that is secure and free which allows people who are interested in participating in research on misophonia and related sensory disorders to be connected with researchers who undertake studies on the conditions and disorders. This tool consists of a list of interested participants, called Research Pool Participants, who have given soQuiet permission to be contacted by academic researchers or to be notified about related research studies.
What are the risks and benefits of signing up as a Research Pool Participant?
In order for research on disorders such as misophonia to progress, researchers need people who experience the conditions they are studying. The lack of qualified participants has been a barrier to advancing our understanding of conditions like misophonia. As a Misophonia Research Pool Participant, you might be able to contribute to the research that can help the world understand these conditions better.
Additionally, prior to the creation of the Misophonia Research Pool, there has been no central place for the many people who want to participate in such research studies to “sign up” to do so.
You may benefit from joining the Misophonia Research Pool as it may:
Make the process of finding and applying for research opportunities easier for participants;
Increase the odds that you will be matched with compelling research participant opportunities;
Help you keep up-to-date on the status of current and future research that you find compelling,
Help you participate in important research that might help improve the lives and wellbeing of others, and impact the future of research for everyone.
The Misophonia Research Pool may benefit society by helping researchers complete their studies sooner, or complete them at all. The Research Pool, in this respect, could contribute to new knowledge being made available to others. This advancement of knowledge about misophonia could bring about novel insights towards causes, potential treatments, and more.
Other than the general delights to be found in altruism, the Misophonia Research Pool might not directly benefit you specifically as a Research Pool Participant. soQuiet can not assure anyone using this tool that they will be contacted about a specific study or be contacted at all.
While soQuiet has taken great care to provide a secure tool where participant information is held to the utmost expectations of privacy and confidentiality, there is an inherent risk that some profile information may be released without your permission.
You may always update your information or remove yourself from the Misophonia Research Pool at any time by contacting soQuiet at research@soquiet.org.
There is no cost to join the Misophonia Research Pool. This tool is funded entirely by donations made to soQuiet, a 501[c]3 tax-exempt nonprofit organization.
Who can join the Misophonia Research Pool?
The Misophonia Research Pool is open to anyone who resides in the United States, Puerto Rico, and Canada. You do not have to be diagnosed with the listed conditions to join the Misophonia Research Pool.
Upon completing the Misophonia Research Pool application form, you will be prompted to indicate if you are registering for yourself or for someone else. Participants between the ages of 13 and 18 years of age will need to be registered by a parent, guardian, or caretaker. Participants of any age who are unable to complete the form can be registered by another person.
What should I expect from signing up for the Misophonia Research Pool?
Adding your name to the Misophonia Research Pool merely places your information into a database of Research Pool Participants which is securely maintained by soQuiet, a nonprofit organization. This information is not shared with outside organizations without your permission.
When a researcher needs participants for an upcoming study which is relevant to the intent behind the Misophonia Research Pool, the researcher will contact soQuiet, who will then disseminate the information about the upcoming study to Research Pool Participants who might be good matches for the goals of the study.
If you want more information on a particular study, that information should be directed to the researcher who is conducting the study.
There is no obligation to participate in any study that is communicated to you via email.
Misophonia Research Pool Disclaimer
soQuiet makes no guarantee that researchers will contact you about studies via the Misophonia Research Pool service.
soQuiet does not verify the academic integrity of these studies and does not hold any responsibility nor opinions on the nature and outcomes of the studies. soQuiet neither endorses nor opposes any specific research, research institution, or study.
The researchers who are conducting the studies are themselves responsible in full for the integrity of their research and for making sure their studies are reviewed by their own Institutional Review Board [IRB]. An IRB is an essential part of academic research, keeping tabs on any risks or concerns of each study. soQuiet’s Misophonia Research Pool is simply a free service for matching up potential participants with researchers.
Is my information protected?
soQuiet fully supports your privacy and confidentiality. Your information will be stored as securely as possible by soQuiet. soQuiet will never sell, rent, or otherwise share your personal information with outside organizations without your permission.
soQuiet also will not use your personal information for its own purposes, such as marketing, etc. Signing up for the Misophonia Research Pool will not add you to the soQuiet mailing list.
soQuiet will only share your personal information with your own written consent.
Once you have connected with a researcher or have begun participating in a study, soQuiet is no longer responsible for how your personal data is being used by the researcher or their institution as the connection is no longer being managed via the Misophonia Research Pool service.
If you have questions or concerns about a particular study that you are interested in or informed about via the Misophonia Research Pool service, please contact the researcher for that study or their respective Institutional Review Board [IRB]
How do I change, update, or delete my information from the Misophonia Research Pool?
At present, you can update, change or delete your information within the Misophonia Research Pool database by emailing research@soquiet.org and we will make the change to your record in our database within seven business days.
Who is involved in the Misophonia Research Pool?
The Misophonia Research Pool is a service provided for free by soQuiet, a 501[c]3 tax-exempt nonprofit organization located in St. Louis, Missouri in the United States. All ideas, questions, or concerns regarding the Misophonia Research Pool should be directed to research@soquiet.org
AGREEMENT
By agreeing to this Misophonia Research Pool Participant Agreement, you willingly agree to let soQuiet store and use your personally identifiable information as described here and in the soQuiet Privacy Policy. You also agree to let soQuiet access, keep, and/or share your registration information if required to do so by law or in the good faith belief that it is necessary to:
Enforce the terms of this Volunteer Agreement or the site’s Terms of Use
Respond to your requests for customer service
Comply with federal, state, or local legal process
By finishing the registration process, you represent and warrant that you live in the United States including Puerto Rico or Canada, are at least eighteen years of age, and that you possess the legal right and ability to enter into this Volunteer Agreement. You agree that if you register on the soQuiet Misophonia Research Pool site, you will give accurate information about yourself. You agree that if any information you provide is inaccurate, soQuiet may keep you from accessing the Misophonia Research Pool tools. If you register someone who may not be able to register themselves (including individuals under the age of 18, or someone who is unable to register without your assistance), you assert that you are their legal guardian, parent, or caretaker and agree to the terms outlined in this agreement.
If you agree, your profile will be added to the Misophonia Research Pool volunteer registry as soon as you submit this form.
Do you have questions or concerns?
All ideas, questions, or concerns regarding the Misophonia Research Pool should be directed to research@soquiet.org
Date of Posting: June 1st, 2022
Updates:
June 4th, 2022 [removed attention check]
June 5th, 2022 [added Canada as included country]
Misophonia Research Pool Participant Agreement.