Document Approved On: 9/29/2010
Project Approval Expires On: 2/2/2011
Document Approved On: 9/29/2010
Project Approval Expires On: 2/2/2011
Emory University School of Medicine
Consent to be a Research Subject
Improving Pediatric Cancer Survivorship Care through SurvivorLink™
You are being asked to be in a research study because you are a childhood cancer survivor. This form is designed to tell you everything you need to think about before you decide whether or not to consent (agree) to be in the study.
The purpose of this study is to develop a website to improve healthcare for childhood cancer survivors. SurvivorLink™ is a website designed to help survivors of childhood cancer communicate with their healthcare providers (doctors, nurses etc.). The website will also be helpful for your healthcare providers to learn about healthcare for childhood cancer survivors.
SurvivorLink™ will provide you with information about healthcare for survivors of childhood cancer. The website will tell you how to find a childhood cancer survivor clinic. When visiting a childhood cancer survivor clinic you will receive a Survivor Healthcare Plan (SHP). A SHP is a document with information about your:
SurvivorLink™ is a safe and secure place for you to store your health records and SHP online. You can allow your healthcare providers to view your SHP and any other health records stored on SurvivorLink™. Your healthcare providers can use the SHP to learn about your cancer, cancer treatment, and the late effects you are at risk for. You may be asked to provide names and contact information for your healthcare providers so they can be invited to register for SurvivorLink™.
You will be asked to complete a survey at the time of enrollment in this study. Over the two year period of this study you will be asked to complete two more surveys regarding use of SurvivorLink™ and other health related questions.
If you are interested in participating, but do not have access to the internet, we will send you information about how to access the Internet within your community. We can also send you study materials in a paper format if you prefer.
There are no physical risks for participating in this study.
We cannot guarantee that you will receive a direct benefit from taking part in this study. However, the information we collect may help us develop programs for cancer survivors in the future.
You will not be offered payment for being in this study.
Emory will keep any research records we produce private to the extent we are required to do so by law. A study number rather than your name will be used on study records wherever possible. Your name and other facts that might point to you will not appear when we present this study or publish its results.
You have the right to leave the study at any time without penalty. Your decision will not affect your relationship with your treating institution.
If you have any questions about this study or your part in it, please contact Dr. Ann Mertens at 404-785-0691.
If you have questions about your rights as a research subject or if you have questions, concerns or complaints about the research, you may contact the Emory Institutional Review Board at 404-712-0720 or 877-503-9797.
If you agree to join this research study, you will sign and date one consent form and return to study investigators. The second copy of this consent form is for your records. Nothing in this form can make you give up any legal rights. By signing this form you will not give up any legal rights.
I have read this consent form (or it has been read to me). All my questions about the study and my part in it have been answered. I freely consent to be in this research study.
By signing this consent form, I have not given up any of my legal rights.