South Carolina launching registry for sickle cell patients

DHEC officials hope to launch a registry by the end of this year. There’s a similar voluntary registry at the national level.
Published: May. 30, 2023 at 4:09 PM EDT
Email This Link
Share on Pinterest
Share on LinkedIn

COLUMBIA, S.C. (WRDW/WAGT) - South Carolina is launching a new tool for people with sickle cell disease.

It’s a registry that state health officials say will be secure and totally voluntary.

The South Carolina Department of Health and Environmental Control says while there’s national data available, state-specific data is limited for now.

“When we’re looking at the health outcomes for South Carolina, when we’re looking at the current status of individuals living in the state, that’s just not there,” DHEC’s Anna Bleasdale said. “So this would help us really look and allocate resources and ensure that our services are strengthened for those individuals living here in the state that have sickle cell disease.”

DHEC officials hope to launch this registry by the end of this year. There’s a similar voluntary registry at the national level that’s overseen by the Sickle Cell Disease Association of America.

Sickle cell disease – the most common inherited blood disorder in the U.S. – causes red blood cells to become misshapen and break down.

This often results in excruciating pain and fatigue anywhere that blood flows in the body – and blockages that can lead to strokes and infections.

One in 400 Black Americans and one in 19,000 Latino Americans have sickle cell disease, while one in 12 Black Americans and one in 100 Latino American are carriers.

Once the registry launches, South Carolinians with sickle cell disease can voluntarily submit information – including their diagnosis, medications, and current treatment plan – and both they and their doctor will be able to access it.

“And then the individual, should they need to seek care from a provider outside of their routine hematologist, they can actually share that information with that provider as well who can validate it and hopefully treat them more timely and appropriately for sickle cell disease,” Bleasdale said.