St. Jude Cloud: a pediatric cancer genomic data-sharing ecosystem

C McLeod, AM Gout, X Zhou, A Thrasher, D Rahbarinia… - Cancer discovery, 2021 - AACR
Effective data sharing is key to accelerating research to improve diagnostic precision,
treatment efficacy, and long-term survival in pediatric cancer and other childhood …

A program of transition to adult care for sickle cell disease

AC Saulsberry, JS Porter… - Hematology 2014, the …, 2019 - ashpublications.org
Most children with sickle cell disease (SCD) today survive into adulthood. Among emerging
adults, there is a marked increase in acute care utilization and a rise in mortality, which can …

Sickle cell nephropathy in the pediatric population

KO Olaniran, ND Eneanya, SU Nigwekar… - Blood purification, 2019 - karger.com
Background: Compared to the past, patients with sickle cell disease (SCD) currently live
longer due to improvements in diagnosis and comprehensive care. Due to these advances …

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

AM Heitzer, J Longoria, V Okhomina… - British journal of …, 2021 - Wiley Online Library
Neurocognitive impairment is common in sickle cell disease (SCD) and is associated with
significant functional limitations. In a cross‐sectional analysis, we examined the association …

[HTML][HTML] Development of the incharge health mobile app to improve adherence to hydroxyurea in patients with sickle cell disease: user-centered design approach

NM Alberts, SM Badawy, J Hodges… - JMIR mHealth and …, 2020 - mhealth.jmir.org
Background Sickle cell disease (SCD) is an inherited blood disorder causing acute
complications and chronic progressive end organ damage. SCD is associated with …

Hyperfiltration during early childhood precedes albuminuria in pediatric sickle cell nephropathy

JD Lebensburger, I Aban, B Pernell… - American journal of …, 2019 - Wiley Online Library
Background In patients with diabetes mellitus, hyperfiltration precedes the development of
albuminuria. Pediatric sickle cell anemia (SCA) patients have a high prevalence of …

Genetic variants associated with therapy-related cardiomyopathy among childhood cancer survivors of African ancestry

Y Sapkota, N Qin, MJ Ehrhardt, Z Wang, Y Chen… - Cancer research, 2021 - AACR
Cardiomyopathy occurs at significantly higher rates in survivors of childhood cancer than the
general population, but few studies have evaluated racial or ethnic disparities, and none …

[HTML][HTML] Establishing a sickle cell disease registry in Africa: experience from the Sickle Pan-African Research Consortium, Kumasi-Ghana

V Paintsil, EX Amuzu, I Nyanor, E Asafo-Adjei… - Frontiers in …, 2022 - frontiersin.org
Sickle cell disease (SCD) is the most common clinically significant hemoglobinopathy,
characterized by painful episodes, anemia, high risk of infection, and other acute and …

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

P Rai, VI Okhomina, G Kang… - American Journal of …, 2023 - Wiley Online Library
Cardiac abnormalities seen in sickle cell anemia (SCA) include diastolic dysfunction, which
has been shown to be associated with high morbidity and early mortality. The effect of …

[HTML][HTML] Publication of data collection forms from NHLBI funded sickle cell disease implementation consortium (SCDIC) registry

JA Glassberg, EA Linton, K Burson… - Orphanet journal of rare …, 2020 - Springer
Background Sickle cell disease (SCD) is an autosomal recessive blood disorder affecting
approximately 100,000 Americans and 3.1 million people globally. The scarcity of relevant …