TICS-LENS

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Would you be willing to share with us your experience with Lyme disease or another disease transmitted by the bite of a tick? If the answer is yes, please read the following information.

Tick Inventory via Citizen Science-Lyme Experiences and Narratives Study (TICS-LENS) is being conducted so we may better understand the experiences and stories of individuals with Lyme or another tick-borne infectious disease.

Lyme disease is the most common tick-transmitted infection in the United States. Thousands of individuals each year are diagnosed with this disease. Researchers at the Marshfield Clinic Research Institute have been conducting tick and pathogen surveillance studies for the last several years. Over the duration of that time, we have heard from many of our community members in the upper Midwest about their experiences with Lyme disease and other diseases caused by the bite of ticks. TICS-LENS is a survey study in which we are inviting individuals to share more detail about their experiences with these diseases. The survey is anonymous. We will only be able to link your survey response back to you if you provide your contact information in the survey for future research. To participate, you must be 18 years of age or older.

The study is designed to be open text. You can share as much or as little information about your experience as you wish. There are no limits to the length of the survey.

How will we use this information? Our goal is to identify themes in these shared experiences to help us develop better research approaches to studying Lyme and other tick-transmitted diseases. Results of the survey will be shared in aggregate in papers and presentations in scientific forums.

If you have any questions about this study, before or after your decision to participate, you may contact us at 715-221-6462. This number is not continuously staffed, so you may be asked to leave a number, and a study member will return your call.

Thank you for considering participation. Please read carefully the following consent form. If you wish to participate after reading the form, you can click the consent box below the consent information, and you will be directed to the survey form.

Tick Inventory via Citizen Science - Lyme Experiences Narratives Study - TICS-LENS: Informed Consent Document
This document provides you with the necessary information to consent to the survey titled "Tick Inventory via Citizen Science - Lyme Experiences Narratives Study." Only fill out this survey if you are over 18 years of age. By sending in this survey, you consent to being a part of this research study. Please keep this document for your records. If you have any questions about this document, contact us at 715-221-6462.

Purpose: The purpose of the survey "Tick Inventory via Citizen Science - Lyme Experiences Narratives Study - TICS-LENS" is to learn more about who is exposed to tickborne disease and how that exposure occurred. This study consists of the narrative survey and option to provide contact information for future surveys or interviews. This study is being conducted by Jennifer Meece, PhD, Alexandra Linz, PhD, and Jakob Hanschu, MS, at the Marshfield Clinic Research Institute (MCRI). For more information about this research, you may contact the investigators at 715-221-6462.

How to participate: You are invited to participate in this research if you are at least 18 years of age. Taking part in this research is voluntary. You can choose not to be in this study or stop at any time. Check the box below to provide consent to participate in this study. After checking the box, it will open to complete the survey. If you agree to provide us with your contact information, we may contact you with future questions. You are not required to provide your contact information when filling out the survey.

Risks & Benefits: There are no major risks from being in this study. As with all research, there is a chance that confidentiality could be compromised. Extensive security and confidentiality procedures are used to decrease the chance of this happening. Being in this study will not help you directly. This study will help us learn about your experiences with tickborne diseases. This may help others in the future.

Confidentiality: The information we are collecting in this survey is voluntary and may contain protected health information depending on the level of detail you wish to provide. Electronic data will be stored securely by MCRI. Summarized, de-identified data from this study may be published in a scientific journal.

Electronic Communication: If you provide your contact information for optional future interviews, you agree that researchers at MCRI may use email or phone to communicate with you regarding this research study. Electronic communication is not secure when sent, stored, or viewed on a personal device. By sending us the survey with your email address on it, you accept all risk of loss of privacy or confidentiality associated with the use of electronic communication for this research study. You may withdraw your consent for electronic communication by notifying us at any time.

Rights of Research Subjects: Being in this study is voluntary. Refusing to participate or discontinuing participation at any time will involve no penalty or loss of benefits to which you are otherwise entitled. If you choose not to be part of this research, your relationship with your doctor and this institution will not change. You are not giving up any legal rights by signing this consent document and taking part in this research study. If you have any questions about your rights as a research subject, you may contact the MCRI's Institutional Review Board (IRB) at 1-800-782-8581 ext. 9-3022. The IRB is responsible for helping protect rights and welfare of human research subjects. You may also call this number to discuss problems and concerns, to request information and ask questions, and to offer input.

Authorization to Use or Disclosed Protected Health Information for Research: Researchers at MCRI are required by HIPAA, the federal privacy law, and other state privacy laws, to get permission to use and/or release identifiable health information from you for research purposes. If you agree to take part in this research study, you agree to provide permission to use and/or release your identifiable health information collected in our surveys for research purposes.

What personal health information will be used or disclosed and for what purpose? The types of identifiable information that may be used by MCRI staff include any information you choose to share as part of this survey. Examples are age, sex, diagnosis, dates, and contact information. If you agree, researchers at MCRI may use this information to contact you with a follow-up interview. Your information may be shared with individuals and groups at MCRI responsible for upholding research regulations. Your private health data will not be shared with individuals or groups external to MCRI.

How long will my authorization last, and can I change my mind? Your authorization to use and/or disclose your health information for this research does not have an end date. You may take back your authorization at any time but will have to do so in writing. Your cancelled authorization will not apply to information that was gathered before you took back your authorization. If you take back your authorization, you can no longer take part in the above-referenced research. To take back your authorization, write a note stating this decision and send it to: Jennifer Meece, Integrated Research and Development Laboratory, 1000 N. Oak Ave, Marshfield, WI 54449.

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To save your responses and end the survey, click the 'End Survey' button below. If you have selected the wrong option by accident and/or wish to return to the survey, click the 'Return and Edit Response' button.