The state of Arkansas did not have a way of tracking patients with sickle cell disease after screening newborns. It is unclear the number of people living in Arkansas with sickle cell disease as well as any information about them. The Arkansas Department of Health has been conducting newborn screenings of all Arkansas births since 1988 that include screening for sickle cell disease. Through this, we know that about 25 babies are born every year in Arkansas with sickle cell disease. Given the life expectancy of those with the most severe form of the disease is in the mid-forties, a rough estimate of the total number of people with the disease in Arkansas is 1,300.
A Sickle Cell Disease Registry was established to learn more about the adults living in Arkansas Where do they live? Where do they receive care? How long are they living? The purpose of the registry is to help health care providers learn more about the adult population and to improve the care they are providing.
Patients are eligible for participation if they are over age 18, live in Arkansas, and have sickle cell disease. Patients are identified for participation by the sickle cell care team. Patients have the option to participate in the data collection as well as provide a one-time blood and urine sample. At the time consent is completed, patients provide information about their past health care utilization, complications, demographic information, sickle cell diagnosis, and complete a quality-of-life assessment. Patient’s health care utilization, labs, medications, and complications are monitored by the sickle cell team through medical chart review and updated yearly. A patient’s tissue sample is collected at the time of their next lab appointment if the patient agreed to blood and urine collection. Their sample is then stored for future research. Collection of data in the registry began in March 2015 and as of March 2017, there were 106 patients enrolled.