Skip to main content

SCCRIP Latest Results

Participant Demographics 

Study size 

Over 1,300 patients from the Southern, Eastern and Midwest regions of the United States currently participate in this study.   

When the study began in 2014, we followed participants up to 25 years of age. In an effort to capture data from the full life span of patients with sickle cell disease, we expanded the age cohort to enroll and follow participants from birth through adulthood.  

SCCRIP PUBLICATIONS
First Author Title Journal Year
Jeremie Estepp, MD What drives transcranial Doppler velocity improvement in paediatric sickle cell anaemia: analysis from the Sickle Cell Clinical Research and Intervention Program (SCCRIP) longitudinal cohort study British Journal of Haematology 2021
Sara Rashkin, PhD Generalization of a genetic risk score for time to first albuminuria in individuals with sickle cell anemia: SCCRIP cohort study results

British Journal of Haematology

2021

Evadnie Rampersaud, PhD and Guolian Kang, PhD

A Polygenic Score for Acute Vaso-Occlusive Pain in Pediatric Sickle Cell Disease

Blood Advances 2021
Andrew Heitzer, PhD

Hydroxyurea treatment and neurocognitive functioning in sickle cell disease from school age to young adulthood

British Journal of Haematology 2021

Li Cheng, Yichao Li

Single-nucleotide–level mapping of DNA regulatory elements that control fetal hemoglobin expression

Nature Genetics 2021
Mary Keenan, MS Empirically Derived Health-Related Quality of Life Profiles in Pediatric Sickle Cell Disease Journal of Pediatric Psychology 2021
Anjelica Saulsberry-Abate, MD Cognitive Performance as a Predictor of Health Care Transition in Sickle Cell Disease British Journal of Hematology 2021
Parul Rai, MD Longitudinal effect of disease-modifying therapy on tricuspid regurgitant velocity in children with sickle cell anemia Blood Advances 2021
Nicole Alberts, PhD Pain in Youth with Sickle Cell Disease A Report from the Sickle Cell Clinical Research and Intervention Program Clinical Journal of Pain 2021
Kenneth Ataga, MD Rapid decline in estimated glomerular filtration rate in Sickle Cell Anemia: Results of multicenter pooled analysis Haematologica 2020
Ti-Cheng Chang, PhD A novel algorithm comprehensively characterizes human RH genes using whole-genome sequencing data Blood Advances 2020
Jeffrey Lebensburger, MD High Bias and Low Precision for Estimated Versus Measured Glomerular Filtration Rate In Pediatric Sickle Cell Anemia Haematologica 2020
Marita Partanen, PhD Association between hydroxycarbamide exposure and neurocognitive function in adolescents with sickle cell disease               British Journal of Haematology 2020
Anjelica Saulsberry-Abate, MD Web-Based Technology to Improve Disease Knowledge Among Adolescents With Sickle Cell Disease: Pilot Study MIR Pediatrics and Parenting 2020
Jeanelle Ali, PhD Attention Difficulties are Associated with Lower Engagement in Adult Care among Youth with Sickle Cell Disease British Journal of Haematology 2020
Rima Zahr, DO Hydroxyurea prevents onset and progression of albuminuria in children with sickle cell anemia American Journal of Hematology 2019
Rima Zahr, DO Children with sickle cell anemia and APOL1 genetic variants develop albuminuria early in life Haematologica 2019
Oyebimpe Adesina, MD Height-Corrected Low Bone Density in Sickle Cell Disease Associates with Severe Outcomes: SCCRIP Cohort Study Results Blood Advances 2018
Jane Hankins, MD, MS Sickle Cell Clinical Research and Intervention Program (SCCRIP): A lifespan cohort study for sickle cell disease progression from the pediatric stage into adulthood Pediatric Blood & Cancer 2018