Project Lead: Dr. Jonathan Ellison
Welcome!
1. This page provides helpful information for you to consider before deciding whether to participate in completing this project. We are engaging patients with kidney stones, 12 years and older, and/ or their caregivers, clinicians and researchers to learn about the type of kidney stone research those who have been or currently are impacted by kidney stones would like us to focus on in our work.
2. The description of the project that follows is part of an engagement project conducted by Dr. Jonathan Ellison at the Medical College of Wisconsin. The purpose of the project is to understand the kidney stone research questions most important to those directly or indirectly affected by kidney stones, to guide priority topics of future stone related research projects.
3. Your opinions are important to us. Participation involves completing the survey. We are looking for feedback on our proposed research agenda. The survey asks you to rate a proposed research agenda based on how important they are to you, community engagement, and whether you would be interested in being contacted to participate in the studies most important to you. This survey will take between 5 to 10 minutes for you to complete.
4. There is no direct benefit to you. However, participating in these survey may help us understand how to improve future kidney stone research based on your feedback. This is an opportunity for you to help guide the research community towards research questions and outcomes most important to you as someone impacted by kidney stones. Taking part in this research is not a part of your job duties, and refusing will not affect your job status. You will not be offered or receive any special job related if you take part in this research.
5. We will do our best to protect your information, but there may be a small risk of loss of confidentiality. To further minimize the risks of confidentiality, you are self-disclosing your contact information if you agree to participate in the study. Your contact information will only be used for survey distribution and any potential future opportunities.
6. Survey responses will be analyzed as a group to identify preference on themes for furture clinical trials. We will NOT reveal any individual survey responses or personal contact information to project members, except for the project lead and project's staff at Medical College of Wisconsin. Only personal information, name/ contact, will be shared with members of the Kidney Stone Engagment Core (KSEC), if you indicate interest in joining KSEC and fully enroll into the KSEC. Information that is shared from participants that provided contact information will be shared anonymously, meaning that no personal information will be shared for those who do not indicate future participation.
7. You will not be compensated for completing the survey.
8. Your participation is voluntary. If you wish to participate, you are indicating that you understand the project's purpose, procedures, risks and benefits. You are agreeing to self-disclose personal contact information for the purpose of the study and future participation with KSEC.
9. If you have questions about the study, please feel free to ask Dr. Jonathan Ellison at (414) 337-3550. If you have questions about your rights as a research participant or want to report any problems or complaints, you can call the Medical College of Wisconsin/ Froedtert Hospital Research Subject Advocate at (414) 955-8844.