Get Connected is the first patient powered registry for sickle cell disease! By registering on this secure and HIPAA-compliant platform, you empower yourself and the sickle cell community to stand up and be counted. Get Connected allows SCDAA to collect and cite the number of people living with sickle cell disease (SCD) and the regions where they live to decision makers. Our goal is to demonstrate the significance of SCD as a global public health issue and to keep SCD at the forefront of health discussions. We want to leverage Get Connected data to promote stable funding for research, better healthcare access, expanded programs, and increased education and awareness for the SCD community and programs throughout our nation.
Get Connected is intended for children and adults with sickle cell disease and their families, children and adults with sickle cell trait, health care providers, clinical researchers and advocacy organizations. It provides high quality information about clinical care, research and health advocacy issues related to sickle cell disease and sickle cell trait. It also improves access to disease specific health care and serves as a platform for research initiatives generated by the needs of the SCD patient population.
Since 2015, SCDAA has trained its community-based member organizations on Get Connected and the shared measurement system, and has encouraged them to promote the platform in their regions.
Get Connected has several benefits, including:
- Connects those affected by sickle cell disease to high quality resources for information on health care, behavioral health, clinical research, and other resources.
- Establishes a secure network to share information related to clinical care, research, health services, policies, and advocacy.
- Establishes patient-powered registry for secure storage of medical information related to diagnosis and treatment.
To register for Get Connected, visit www.GetConnectedSCD.org.