Study Information Sheet |
Please read if you are located in North America or Europe:
You are being asked to participate in a research study. Research studies are done to answer important questions that could change or improve the way things are done in the future. Below is information about the research study that will help you decide if you want to participate. Please read this form, and ask any questions you have, before deciding if you want to be in the study.
All research is voluntary. You can choose not to take part in this study. If you decide to participate, you can change your mind and decide to leave the study at any time. If you join the study, you can change your mind. If you change your mind, you may close your internet browser window to stop at any time. You will not be penalized or lose any benefits if you decide not to participate or choose to leave the study later.
We are inviting you to take part in this survey because you are a patient aged 14 and older with juvenile dermatomyositis/polymyositis (abbreviated JDM) or a caregiver of a child or adolescent who has JDM. This study will help us improve the way we provide care to patients with JDM over telemedicine.
Purpose
The purpose of this survey is to better understand patients' and their caregivers' opinions and experiences with telemedicine. Please be assured that telemedicine visits are not intended to fully replace in-person visits.
This is a one-time survey that will take about 10-15 minutes to complete. This is an anonymous survey, which means that no one will know which answers are yours. Since no one will know which answers are yours, we will not be able to delete your answers after you submit the survey.
Potential risks and benefits
You may feel uncomfortable answering some survey questions. You can skip any questions that make you feel uncomfortable or that you do not want to answer.
We don't think you will personally benefit from taking part in this study. We hope to learn things that will help improve telemedicine in the future.
We will protect your information and make every effort to keep your information confidential, but we cannot guarantee absolute confidentiality. No information which could identify you will be shared in publications about this study.
Your information may be shared outside the research study if required by law. We also may need to share your research records with other groups for quality assurance or data analysis. These groups include the Indiana University Institutional Review Board or its designees, and state or federal agencies who may need to access the research records (as allowed by law).
Since this is an anonymous survey, information collected in this study may be used for other research studies or shared with other researchers for future research. Since there is no identifying information, we will not ask for your additional consent.
There is no cost to participate. All participants who complete the survey can choose to enter a raffle for a chance to win one of ten $10 gift cards.
The study is being conducted by Dr. Stacey Tarvin, pediatric rheumatologist at Indiana University School of Medicine and by Dr. Ingrid Goh, Research Associate at The Hospital for Sick Children, and Dr. Peter Blier, pediatric rheumatologist.
If you have any questions about this study or encounter a problem, contact Dr. Stacey Tarvin, at 317-274-2172.
For questions about your rights as a research participant, to discuss problems, complaints, or concerns about a research study, or to obtain information or to offer input, please contact the IU Human Research Protection Program office at 800-696-2949 or at irb@iu.edu.
Please read if you are located in Europe:
Declaration of Consent for Storage and Processing of Personal Data for the Purpose of Research conducted by Indiana University
Your personal data may be regulated under the EU General Data Protection Regulation (the "GDPR"). This document provides notice of rights you may have under the GDPR and confirms your consent to the collection and processing of your personal data in this research study.
The Trustees of Indiana University on behalf of the Pediatric Rheumatology Department, located at 1120 W. Michigan St. Indianapolis, IN 46202, ("IU") act as the data controller with respect to your data.
Your data will be retained until the data is no longer useful for the intended purposes of the research. The researchers will only use your data as outlined in the Study Information Sheet above.
Indiana University will not collect any of your personal data as part of research being conducted.
By pressing the "I agree to participate" button, you give your consent that Indiana University may collect, transfer, store, and process your Data in the United States for the purposes of conducting the research described in the Study Information Sheet. Your data will be shared with the following individuals who are not affiliated with Indiana University:
- Dr. Peter Blier, MD, Pediatric Rheumatologist, Co-Principal Invesitator
- Dr. Ingrid Goh, Research Associate at The Hospital for Sick Children, Co-Principal Investiagtor
You are free to give us your consent. If you choose not to provide your consent, you will not be able to participate in this research.
You have the right to withdraw your consent at any time. You can withdraw your consent by closing your browser. If you withdraw your consent, no further data will be collected from you; however, the researchers may continue to use data that has already been collected about you if the researchers determine that ceasing to use such data could seriously impair the achievement of the objectives of the research.
- With regard to the processing of your Data, you have the following rights:
- Request from us access to your personal data pursuant to Art. 15 GDPR.
- Request from us rectification of your personal data pursuant to Art. 16 GDPR.
- Request from us erasure of your personal data pursuant to Art. 17 GDPR.
- Request from us restriction of processing pursuant to Art. 18 GDPR.
- Right to data portability pursuant to Art. 20 GDPR.
- Right to lodge a complaint with a supervisory authority pursuant to Art. 57(1) lit. f GDPR.
Please read if you are located in North America or Europe:
If you want to join the study, please press the "I agree to participate" button.
If you do not want to join the study, please press the "I DO NOT agree to participate" button.
If you have questions about participating, please press the "I do not understand" button.
Thank you.