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NJ May Create Sickle Cell Trait Registry

Assemblyman Herb Conaway

A bill passed by the New Jersey Assembly would create a confidential registry of newborns diagnosed with sickle cell trait.

Assemblyman Herb Conaway says many people with sickle cell disease are not getting standard treatments for that condition.

“The hope is that by establishing the registry and having the Department of Health get in touch with those who have trait or who have sickle cell disease itself with messages about the kind of treatments they receive, we can empower patients to advance their own health with their physicians.”

Conaway says individuals with sickle cell trait could pass the gene onto their children and put them at risk for sickle cell disease that causes severe anemia, chronic pain, and other health complications.

He says the registry would help with family planning decisions.

An estimated three million people in the United States have sickle cell trait and it’s more prevalent among African Americans.

Assemblyman Benjie Wimberly says increasing the number of people who know whether they are carriers of that trait can potentially decrease the prevalence of sickle cell disease.

“Being African American, it’s something that has impacted our community for many years. I know on personal cases that people have found out later on, particularly even cases maybe if somebody is adopted or things like that, I think it would be important to have that type of registry.”