ONLINE SURVEY
Informed Consent Form
Study Title: Stopping medicines for juvenile idiopathic arthritis: perspectives of patients and families
You are being asked to consider taking part in a research study. This study is being performed by
Dr. Daniel Horton, a pediatric rheumatologist and researcher in the Department of Pediatrics at Rutgers Robert Wood Johnson Medical School. This study is for 1)
people age 18 years and older who have a history of juvenile arthritis (JA, also called juvenile idiopathic arthritis (JIA) or juvenile rheumatoid arthritis (JRA)) and 2) the parents or caregivers of children with juvenile arthritis.
Teenagers ages 13 to 17 can also take part in this research, but their parents must first complete this survey to be eligible.
This study is being supported by a research grant from the Childhood Arthritis and Rheumatology Research Alliance (
CARRA), with additional support from Patients, Advocates, and Rheumatology Teams Network for Research and Service (
PARTNERS).
PURPOSE OF THE STUDY:
We want to learn how young people with juvenile arthritis and their families make decisions about their medicines. Specifically, we want to learn more about
why people might or might not stop medicines that treat juvenile arthritis. We recently interviewed young people with juvenile arthritis and their families about this topic. Through these interviews, we learned a lot about the challenges of dealing with juvenile arthritis and the things that help people make decisions about medicines. With this new survey, we hope to hear from even more people about this issue. Whether or not you took part in an interview, you are welcome to take this survey.
WHAT WILL BE DONE?
The first part of this survey will ask about different reasons that might affect your decision to continue or stop medicines. The second half of the survey will ask questions about your or your child's personal background (for example, age, gender, where you live). We also ask questions about your (child's) juvenile arthritis and medicines. This survey takes about 10 minutes to complete.
If you would like a chance to win a gift certificate for taking part in this study (see Compensation below), you will have the option to give us your name and contact information.
You are not required to write your name or contact information. Plus, your name and contact information will be kept separate from your responses to the survey (see Confidentiality below).
If you are a parent of a child with juvenile arthritis between the age of 13 and 17, we will ask if you give permission for your child to take a similar survey. To do this, you must give your child your survey ID number, which is shown at the end of the survey. This ID number will let us link your surveys together. We will
not be able to identify you or your child personally based on this ID number.
Parents, their children, and other family members will not be able to see one another's own responses to the survey.
Participation in this study is optional. The only alternative to this study is not to participate.
RISKS OR DISCOMFORTS:
Few risks are anticipated from taking part in this study. As with any research study, it is possible that confidential data will be lost or stolen, or that you will be identified as a participant. Every precaution will be taken to protect your and your child's personal information, privacy, and identity. Some people may experience discomfort or embarrassment in thinking about sensitive matters related to juvenile arthritis and medicine use. If you feel uncomfortable with a question, you can skip that question or withdraw from the study altogether. Only a few key questions are required in this study.
BENEFITS OF THIS STUDY:
There is no direct benefit to you for taking part in this study. You will help us and others better understand how young people with juvenile arthritis and their families make decisions about stopping medicines.
CONFIDENTIALITY:
All efforts will be made to keep your (and your child's) personal information completely confidential. All study information will be kept in a secure, password-protected file on a secure computer network. Only the researchers working on this study will be able to see information that can identify you or your child.
If you decide to give us your name and contact information for a chance to win a gift card, this information will be kept separate from your responses to the survey.
We will not be able to link your responses to you personally. The same is true if your child takes part in the study. We will remove your (and your child's) name and contact information from the study database once the winners of the gift cards are chosen.
After finishing the survey, participants will be able to see a summary of everyone's responses to the survey. No one will be able to identify you, your child, or your responses through this summary.
We will not use any information that can identify you or your child in any professional presentations or publications.
COMPENSATION:
Individuals who are eligible for the study and complete the survey will have the opportunity to win one of six Amazon.com gift cards worth $100 (US).
WITHDRAWAL:
Your participation is
voluntary and
optional; you are free to withdraw your participation from this study at any time. If you do not want to continue, you can simply leave this website.
HOW THE FINDINGS WILL BE USED:
The results of the study will help rheumatologists communicate more effectively with young people with juvenile arthritis and their families about this topic. The findings may also help with the design of future studies on stopping medicines for juvenile arthritis. The results from this study will be presented at professional meetings of pediatric rheumatologists and published in a medical journal in the future.
CONTACT INFORMATION:
If you have concerns or questions about this research study, please contact Dr. Horton at 1-732-235-4980 or
stopjiameds@rutgers.edu.
If you have questions about your rights as a research participant, please contact the Rutgers IRB Director at 1-732-235-9806.
By beginning the survey, you acknowledge that
you are least 18 years old, you have read this information, and you agree to participate in this research, with the knowledge that you are free to withdraw your participation at any time without penalty.