Sickle Cell Projects

Sickle-Cell Illustration.

Sickle cell disease is an inherited blood disorder that affects red blood cells. People with sickle cell disease have red blood cells that contain mostly hemoglobin* S, an abnormal type of hemoglobin. Sometimes these red blood cells have difficulty passing through small blood vessels. When the damaged cells block small blood vessels, tissue that does not receive a normal blood flow eventually becomes damaged. These blockages can cause other complications such as lung tissue damage (acute chest syndrome), pain episodes (arms, legs, chest and abdomen), stroke and priapism (painful prolonged erection). Sickle cell disease also damages most organs including the spleen, kidneys and liver. Damage to the spleen makes sickle cell patients, especially young children, easily overwhelmed by certain bacterial infections. Visit the Sickle Cell Disease Association of America website to learn more.

Because sickle cell disease affects so many people, conducting relevant and effective research is imperative. Our goal is to improve the quality of life, health and services for individuals and families living with sickle cell disease, while empowering them to participate in disease-related projects. Learn more about our studies investigating various aspects of sickle cell disease.

The objective of the project is to determine the feasibility and acceptability of SCThrive, a self-management intervention, and to evaluate its initial efficacy for increasing behavioral activation in adolescents with sickle cell disease. Learn more about this project

Sickle Treatment and Outcomes in the Midwest (STORM)

The goals of this Regional Collaborative are to: 1) increase the number of providers caring for sickle cell patients in the region; 2) increase the number of providers prescribing hydroxyurea in the region; and 3) increase the number of sickle cell patients receiving treatment from a knowledgeable provider in the region.

This project involves developing and testing patient centered, comprehensive Hydroxyurea adherence intervention, combining storytelling with tailored error prevention strategies.
This is a factorial design study to determine the most important variables of proper sleep hygiene in hospitalized patients.
This project involves developing a visit decision aid and video narratives for parents of children with sickle cell disease age 5-17 years to promote shared decision making about Hydroxyurea.