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SCCRIP Latest Results

Participant demographics 

Study size 

More than 1,600 patients from the Southern, Eastern, and Midwest regions of the United States currently take part in this study.   

When the study began in 2014, we followed participants up to age 25. To capture data from the full lifespan of patients with sickle cell disease, we expanded the age range to enroll and follow participants from birth through adulthood.  

Lastest published results (2021-24)

SCCRIP Publications

First Author Title Journal Year
Nicole Alberts, PhD Agreement between youth and caregiver report of pain and functioning in pediatric sickle cell disease: PedsQL sickle cell disease module Pain 2024
Narek Israelyan, MD RH genotypes and red cell alloimmunization rates in chronically transfused patients with sickle cell disease: A multisite study in the USA Transfusion 2024
Andrew Heitzer, PhD Catechol-O-methyltransferase gene (COMT) is associated with neurocognitive functioning in patients with sickle cell disease Current Research in Translational Medicine 2023

Tarun Aurora, MD

Multicomponent Strategy Improves Human Papillomavirus Vaccination Rates Among Adolescents with Sickle Cell Disease

Journal of Pediatrics

2023

Justin Kirkman, MD, PhD

Genetic Variation and Sickle Cell Disease Severity: A Systematic Review and Meta-Analysis

JAMA Network

2023

Chibuzo Ilonze, MD

Association of Elevated Tricuspid Regurgitation Velocity with Cerebrovascular and Kidney Disease in Children with Sickle Cell Disease

Blood Cancer

2024

Yan Zheng, MD, PhD

Proinflammatory state promotes red blood cell alloimmunization in pediatric patients with sickle cell disease

Blood Advances

2023

Joshua Semko, MA

Examining the influence of pain and fatigue on neurocognitive functioning in adolescents and young adults with sickle cell disease

Pediatric Blood & Cancer

2023

Parul Rai, MD

Longitudinal effect of disease-modifying therapy on left ventricular diastolic function in children with sickle cell anemia

American Journal of Hematology

2023

Nidhi Bhatt, MD

Health Literacy Correlates With Abbreviated Full-Scale IQ In Adolescents And Young Adults With Sickle Cell Disease

Pediatric Blood & Cancer

2023

Andrew Heitzer, PhD

Social Determinants of Neurocognitive and Academic Performance in Sickle Cell Disease

Pediatric Blood & Cancer

2023

Kenneth Ataga, MD

Sex differences in progression of kidney disease in sickle cell disease

Haematologica

2022

Kenneth Ataga, MD

Longitudinal Study of Glomerular Hyperfiltration in Adults with Sickle Cell Anemia: a Multicenter Pooled Analysis

Blood Advances

2022

Rima Zahr, DO

Enuresis and Hyperfiltration in Children with Sickle Cell Disease

Journal of Pediatric Hematology Oncology

2022

Hamda Khan, MA

Sickle cell disease and social determinants of health: A scoping review

Pediatric Blood & Cancer

2022

Kristen Howell, PhD

Assessment of transition readiness to predict health care utilization during transition to adult care in sickle cell disease

Expert Review of Hematology

2022

Cara Morin, MD, PhD

Diffuse Myocardial Fibrosis Occurs in Young Patients with Sickle Cell Anemia Despite Early Disease Modifying Therapy

Blood

2022

Janaka Liyanage, PhD

A Versatile and Efficient Novel Approach for Mendelian Randomization Analysis with Application to Assess the Causal Effect of Fetal Hemoglobin on Anemia in Sickle Cell Anemia

Mathematics

2022

Parul Rai, MD

The effects of cardio-selective β blockade on diastolic dysfunction in children with sickle cell disease

Haematologica

2022

Heidi Heyman, MD

COVID-19 infection and pain in adolescents with sickle cell disease: A case series

eJHaem

2022

Jennifer Longoria, PhD

Neurocognitive functioning in children with sickle cell disease and history of abnormal transcranial doppler ultrasonography

Pediatric Blood & Cancer

2022

Andrew Heitzer, PhD

Internalizing Symptoms in Adolescents With Sickle Cell Disease

Journal of Pediatric Psychology

2022

Ana Trpchevska, MS;  Andrew Heitzer, PhD

Adaptive functioning in children and adolescents with sickle cell disease

Journal of Pediatric Psychology

2022

Andrew Heitzer, PhD

Fetal hemoglobin modulates neurocognitive performance in sickle cell anemia

Current Research and Translational Medicine

2022

Melissa Cregan, DO

Prevalence of neuropathic pain in adolescents with sickle cell disease: A single-center experience

Pediatric Blood & Cancer

2022

Kenneth Ataga, MD

Rapid Decline in Estimated Glomerular Filtration Rate in Sickle Cell Anemia: Results of a Multicenter Pooled Analysis

Haematologica

2021

Andrew Heitzer, PhD

Neurocognitive functioning in preschool children with sickle cell disease

Pediatric Blood & Cancer

2021

Andrew Heitzer, PhD

Social Determinants of Health and Neurocognitive Functioning in Sickle Cell Disease

Pediatric Blood & Cancer

2021

Jerlym Porter, MD, PhD

Nocturnal Enuresis in Sickle Cell: Sociodemographic, Medical, and Quality of Life Factors

Journal of Pediatric Psychology

2021

Kristen Howell, PhD

Transition care continuity promotes long-term retention in adult care among young adults with sickle cell disease

Pediatric Blood & Cancer

2021

Jeffrey Lebensberger, DO

High bias and low precision for estimated versus measured glomerular filtration rate in pediatric sickle cell anemia

Haematologica

2021

Grace Champlin, MD

Progression of central nervous system disease from pediatric to young adulthood in sickle cell anemia

Experimental Biology and Medicine

2021

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, PhD; Yichao Li, PhD

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 Haematology

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

Contact SCCRIP

If you are not yet in this study but would like to join, email us at  sccrip@stjude.org.

: If you take part in SCCRIP, please update your contact information so we can stay connected. 

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