Sickle Cell Disease Association Launches First Patient-powered Registry

The Sickle Cell Disease Association of America (SCDAA) recently launched the first patient-driven registry for sickle cell disease (SCD), called Get Connected.

The new registry was launched by the SCDAA on June 19, World Sickle Cell Day, and is intended for children and adults with sickle cell disease, their families and healthcare providers, as well as advocacy groups, researchers, and people with sickle cell trait.

The platform offers patients a safe way for storing their medical information related to diagnosis and treatment, which should make it easier for patients to navigate through the healthcare system.

It also provides patients with access to disease-specific healthcare services and high-quality information about clinical care, research, advocacy and policy issues concerning sickle cell anemia.

Get Connected is also intended to promote clinical research initiatives on sickle cell disease by getting scientists together with the aim of developing clinical studies based on the needs of sickle cell patients.

According to the SCDAA, the platform is a way to connect people with sickle cell disease to resources on healthcare, behavioral health, clinical trials, and more.

The initiative is another step forward for the SCDAA toward its mission — to advocate for those with sickle cell disorders and empower community-based organizations to improve patients’ quality of life and raise public awareness, while promoting the search for a universal cure.

It all begun in 2015, when the SCDAA began training its member organizations on how to use the Get Connected registry and encouraging them to promote the platform.

Get Connected already has an enrollment of at least 6,128, of whom 4,984 are sickle cell patients, 633 have sickle cell trait, and 511 are non-patients.

“We are very excited to officially launch Get Connected, the first patient-powered registry for sickle cell disease, especially on World Sickle Cell Day,” Beverley Francis-Gibson, president and CEO of SCDAA, said in a news release.

“This database provides a significant benefit for the sickle cell community and for our efforts to share information, resources, and to collect data that can be leveraged for advocacy, research, and awareness efforts,” she said. “We encourage individuals to register today.”

To register, please visit www.GetConnectedSCD.org.