INTRODUCING THE NEW SICKLE CELL ANEMIA “GET CONNECTED” PATIENT-POWERED REGISTRY!
What Is The “Get Connected” Registry?
The registry is a HRSA-sponsored program that enables people with sickle cell anemia or trait to receive information about current advocacy initiatives, treatments, therapies, and research studies. This is another way to stay informed and help researchers help you!
Is My Information Protected?
The federal privacy regulations of the Health Insurance Portability & Accountability Act (HIPPA) protect your identifiable health information. Any information you give to the Get Connected registry is private and will be protected as required by law. Your information will be stored in a secure database at the SCDAA headquarters. In addition, this is a “patient-powered” registry, which means that you are always in control of your own data and can opt-out at any time.
Why Should I Join The “Get Connected” Registry?
Patients who participate in the registry may receive or share information critical to establishing better health policy and improving federal funding for those living with sickle cell disease. Participation may help researchers to find new treatments, create new research studies, develop new public health policy initiatives, and work for the improvement of all lives affected by sickle cell disease. By joining the “Get Connected” registry, you may have the opportunity to contribute to overall improvement and increased access to equitable care for sickle cell patients. (The value of hydroxyurea treatment for sickle cell disease was established through patient participation in research studies!)
How Do I Join The “Get Connected” Registry?
Complete the initial enrollment form online at www.GetConnectedSCD.org and then check the “I Agree” box at the end of this consent form to accept the terms. You will be asked to provide your contact information and sickle cell status. As you fill out the brief form, you will be asked if you are affiliated with a national sickle cell organization. Please select the “Sickle Cell Anemia Foundation of Oregon” from the popdown list. That’s us!
I Still Have Questions
If you have any further questions or comments, please contact us at 503 249 1366 and we’ll be happy to speak with you. When you are ready to register for GET CONNECTED, click HERE.