Taking Charge of Your Health with the First National Sickle Cell Patient Powered Registry: “Get Connected”
“Get Connected” is a Patient Powered Registry designed to create a way for individuals with sickle cell and sickle cell trait to receive information about current advocacy initiatives, treatment, therapies, and research studies.
“Get Connected” collects and stores basic demographic information and allows registered persons with sickle cell to keep their medical history secured and up-to-date in one electronic location. It provides a continuous stream of newsletters, community forms, and other information about sickle cell. A national patient registry where everyone can actively stay up-to-date on the sickle cell community and maintain their medical histories will allow the sickle cell community to become stronger and more unified in efforts to build better health care solutions across the country. Input from registered people with sickle cell will help to identify critical needs and form a voice to support vital research; and lead to the development of much needed care improvement guidelines.
Aggregate level (no names or other identifying information) data from entries made by individual with sickle cell will provide insights on the number people currently are living with sickle cell disease in the United States. This critical information can then be used to request substantial funding support for research and treatment – bringing us another step closer to finding a cure.
TAKE CHARGE OF YOUR HEALTH AND REGISTER TODAY, Click Here. All information is stored on a secure database and all identifiable health information entered into the registry is protected as required by the terms of the Health Insurance Portability & Accountability Act (HIPPA). No personal health information will be shared with anyone without your permission.