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New Jersey may start a confidential sickle cell trait registry

New Jersey State Capitol building in Trenton. (Alan Tu/WHYY)

New Jersey State Capitol building in Trenton. (Alan Tu/WHYY)

The New Jersey Legislature is considering creating a confidential registry of newborns diagnosed with sickle cell trait.

Assemblyman Herb Conaway said 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,” he said.

Conaway said 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 said 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. Sickle cell disease is an inherited red blood cell disorder. People with SCD have abnormal hemoglobin, called hemoglobin S or sickle hemoglobin, in their red blood cells. Hemoglobin is a protein in red blood cells that carries oxygen throughout the body.

Assemblyman Benjie Wimberly said 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.”  

The image shows how sickle hemoglobin genes are inherited. A person inherits two hemoglobin genes—one from each parent. A normal gene will make normal hemoglobin (A). A sickle hemoglobin gene will make abnormal hemoglobin (S). (Image from the National Institutes of Health)

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