The Sickle Cell Clinical Research and Intervention Program (SCCRIP) studies the issues that a large group of sickle cell disease patients experience over time. St. Jude scientists want to know how sickle cell disease progresses throughout patients’ lives. The researchers also want to learn about the health and social effects of the disease and the long-term benefits of certain treatments.
About the Study
Since 2014, SCCRIP has collected data from over 1,300 sickle cell disease patients treated in hospitals across the Southeast and Midwest United States. Thanks to our participants and their families, we have been able to advance sickle cell disease research. What we learn from SCCRIP will help us develop care guidelines and create better treatments.
Cohort studies are a type of medical research that study the causes of disease. Cohort studies also find links between life-threatening factors and patients’ quality of life. The word “cohort” means a group of people. These studies look at groups of people who have had similar issues within a certain time period.
The people who take part in SCCRIP share a common history of diagnosis and treatment for sickle cell disease.
Late-effects are health problems that continue or develop later in life. Late effects are linked to the progression of sickle cell disease and/or to the treatments patients received. SCCRIP collects health information throughout a participant’s lifespan. Details gained from this study help us better understand how sickle cell disease progresses. It also shows us how treatments affect long-term health.
The study’s research includes optional DNA banking. This process stores blood, urine, saliva, stool or other material for use in future genetic studies. The genetic studies are designed to help us better understand sickle cell disease and are not used as clinical diagnostic tests. You can opt out of this portion and still take part in the overall study.