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What is a voluntary registry? A voluntary registry includes a group of people who have something in common and have agreed to have their information used for a specific purpose.
What is the Forteo Patient Registry? The Forteo Patient Registry is a voluntary registry and includes people who have taken Forteo at least once. Everyone who has signed up to join this Registry has agreed to share selected information about themselves. This information is then used to help study the long-term safety of Forteo, specifically the potential risk of osteosarcoma, a rare bone cancer.
Who can sign up for the Forteo Patient Registry? Anyone who has taken Forteo, even once, can sign up to join the Registry if they are at least 18 years old and live within the 50 United States or Washington, DC. (Residents who live in US territories such as Guam or Puerto Rico currently are not eligible to participate in the Registry.) Whether or not you decide to sign up, you can still get Forteo at a pharmacy of your choice, just as your doctor prescribed.
How do I sign up for the Forteo Patient Registry? Participation in the Registry is completely voluntary and involves only three steps: The entire sign-up process will take no more than 3-5 minutes of your time. You will also receive $5 to thank you for your time. Once the Registry forms are completed and returned to RTI International (RTI), you will not be contacted again. Sign up.
Step 1: Complete a short pre-enrollment form over the phone or by mail.
Step 2: After we process your pre-enrollment information, we will mail you a study packet that will include an informed consent form, a short registration form, and $5 to thank you for your time completing these forms.
Step 3: Return the informed consent and registration forms. This will be the only time you need to give your information during the entire study.
Who is running the Forteo Patient Registry? RTI, a nonprofit research organization located in Research Triangle Park, North Carolina, is running the Registry. The Registry is sponsored by Eli Lilly and Company, the makers of Forteo.
Will my personal information be protected? Your personal information, including any data that can identify you, will not be shared with Eli Lilly and Company, the sponsor of this Registry, or with anyone outside the research team, without your permission to do so.
How does the Forteo Patient Registry work? When patients sign up for the Registry, we take the information you provide from the registration form and store it in a secure database at RTI. We then send this information to state health cancer registries. Cancer registries are located in every state and are required by law to keep information on every newly diagnosed case of cancer in their state. If you sign up for the Forteo Patient Registry, we will link the information from your registration to participating cancer registries every year until the year 2024. We will use the results from the participating cancer registries to find out whether patients who take Forteo have a higher chance of developing osteosarcoma, a rare bone cancer. Everyone in the US who takes Forteo is asked to sign up, however a patient can still get Forteo if they do not sign up. Remember, joining this Registry does not mean that you have this bone cancer or will get this bone cancer.
If you would like to talk to someone about the Registry, you may call RTI International and speak to an RTI Registry team member at 1-866-382-6813, a toll-free number.
If you have questions about Forteo, please contact Eli Lilly and Company directly or talk to your doctor. You may contact Eli Lilly and Company by calling 1-800-LillyRx (1-800-545-5979) or visiting www.Forteo.com.