A5082901400- Hemoglobinopathies and Related Disorders
- Iron Metabolism and Disorders
- Prenatal Screening and Diagnostics
- HIV/AIDS Research and Interventions
- Blood groups and transfusion
- Food Security and Health in Diverse Populations
- LGBTQ Health, Identity, and Policy
- Folate and B Vitamins Research
- Blood Coagulation and Thrombosis Mechanisms
- Health Literacy and Information Accessibility
- Adolescent and Pediatric Healthcare
- Blood donation and transfusion practices
- Reproductive Health and Contraception
- Syphilis Diagnosis and Treatment
- Reproductive Health and Technologies
- Pregnancy and preeclampsia studies
- Palliative Care and End-of-Life Issues
- Ethics and Legal Issues in Pediatric Healthcare
- Pharmacological Effects and Toxicity Studies
- Chronic Disease Management Strategies
- Acute Lymphoblastic Leukemia research
- Neonatal Health and Biochemistry
- Cystic Fibrosis Research Advances
- Hepatitis B Virus Studies
- Family and Disability Support Research
Nationwide Children's Hospital
2016-2025
The Ohio State University
2015-2025
Center for Innovation
2017-2023
University of Utah
2023
Ohio University
2023
St. Jude Children's Research Hospital
2017
Harvard University
2016
Children's Hospital of Pittsburgh
2012
Riley Hospital for Children
2011
Background: The management of acute and chronic pain for individuals living with sickle cell disease (SCD) is a clinical challenge. This reflects the paucity SCD research limited understanding complex biological differences between pain. These issues collectively create barriers to effective, targeted interventions. Optimal requires interdisciplinary care. Objective: evidence-based guidelines developed by American Society Hematology (ASH) are intended support patients, clinicians, other...
Abstract Background Poor hydroxyurea (HU) adherence limits effective HU use in patients with sickle cell disease (SCD). Electronic directly observed therapy (DOT) may limit costs and achieve high children SCD. This study aimed to determine if electronic DOT was feasible, acceptable, could ≥90% adherence. Procedure Children SCD were recruited for this single institution, 6‐month pilot they had been prescribed ≥6 months daily access a smartphone or computer. Participants submitted...
Abstract Sickle cell nephropathy results in chronic kidney disease (CKD), which is associated with significant morbidity and mortality sickle anemia (SCA). Albuminuria an early manifestation of nephropathy; however, little known about progression albuminuria or its correlation glomerular filtration rate (GFR) decline CKD. We studied 303 SCA participants a prospective, multicenter, longitudinal study. collected steady-state urine serum samples yearly assessed albumin/creatinine ratio (ACR),...
Guidelines recommend that hydroxyurea be offered to children with sickle cell disease (SCD) as early 9 months of age using shared decision-making. To help clinicians implement decision-making parents, we developed the Hydroxyurea Shared Decision-Making (H-SDM) toolkit. We evaluated its effectiveness on parent decisional uncertainty, perceptions decision-making, knowledge, and likelihood being prescribed hydroxyurea. Sites began in usual care condition (clinician pocket guide) before crossing...
ABSTRACT It is unclear if adolescents with sickle cell disease (SCD) are screened for depression, since primary care provider (PCP) visits decline age and socioeconomic disadvantage may impact receipt of care. This 1‐year study identified 97% SCD at Nationwide Children's Hospital (NCH) had a PCP. Among those an NCH PCP ( n = 55), 40% saw their 33% were depression. Socioeconomic was not associated depression screening p 0.55) or 0.22). While often have PCPs, interventions to increase...
Key Points Adults with SCD have an increased incidence of VTE, but similar data in children are lacking. In this 7-year, multicenter retrospective study, 1.7% developed VTE.
Nephropathy is a common and progressive complication of sickle cell anemia (SCA). In SCA mice, we found that hyperangiotensinemia in the absence hypertension underlies nephropathy, its downregulation by losartan, an angiotensin-II-receptor-1 blocker, reduced albuminuria progression nephropathy. Therefore, performed phase-2 trial oral given for 6 months, to explore whether it children adults with SCA. Participants were allocated groups defined class baseline urinary albumin-to-creatinine...
Abstract Adult males with sickle cell disease (SCD) may have abnormal semen parameters, raising the concern that SCD and/or treatments impact fertility. Yet, studies include adolescents are lacking. To determine if fertility testing is feasible in male SCD, and to explore their experiences outcomes of testing, 33 who completed a web‐based reproductive health education program were offered free analysis. Five (15%) obtained each had abnormalities. Barriers included lack time transportation...
Postthrombotic syndrome (PTS) is a chronic morbidity of venous thromboembolism (VTE) in children. Information about the evolution PTS lacking Present study was aimed to evaluate time-course extremity children who were serially followed hematology clinic. This retrospective cohort included 69 consecutive with documented VTEs that presented symptoms VTE: 67 or without extension vena cava, 2 inferior cava VTEs. Severity assessed using modified Villalta scale. Median age 12.6 years...
Abstract Background/objective Sickle cell disease (SCD) and hydroxyurea have implications for fertility reproductive health. The goal of this study was to examine desire parenthood health knowledge among a cohort adolescent young adult (AYA) with SCD receiving their caregivers at large pediatric academic center. Methods Patients were approached from September 2016 July 2017 if they were: (1) 12–20 years old, (2) prescribed least 6 months, (3) proficient in English, (4) accompanied by...
Abstract Consistent with studies showing a high prevalence of the Duffy null phenotype among healthy Black Americans, this retrospective study found that was present in >75% young and contemporary cohort children sickle cell disease (SCD) United States. Despite potential for to impact absolute neutrophil counts, hydroxyurea (HU) dosing, outcomes, it not associated being prescribed lower HU dose or having increased acute SCD visits early treatment course. Future are needed confirm these...
Abstract Background As survival rates for individuals with sickle cell disease (SCD) increase, calls have been made to improve their reproductive healthcare and outcomes. The research team created a web-based program entitled Fertility edUcaTion Understand ReproductivE health in Sickle (FUTURES). study aim was use the Consolidated Framework Implementation Research (CFIR) during pre-implementation identify challenges opportunities from individual systems level of implementation ultimately...
Despite universal screening that detects sickle cell trait (SCT) in infancy, only 16% of Americans with SCT know their status. To increase status awareness, effective education for patients and families is needed. The objective this study was to assess caregivers' knowledge before after an in-person session.A trained educator provides caregivers referred infants at Nationwide Children's Hospital. From August 2015 July 2016, primarily English-speaking hemoglobin S-trait were recruited...
Background Hydroxyurea is a disease-modifying medication for patients with sickle cell disease (SCD). Despite demonstrated efficacy, hydroxyurea nonadherence in clinical practice common and results worse health outcomes nonadherent patients. Mobile Directly Observed Therapy (Mobile DOT) pilot-tested, electronic, multidimensional adherence intervention children SCD. DOT includes sending daily text message reminders to take hydroxyurea, recording videos that capture their administrations the...
Abstract Objective Hydroxyurea lowers the incidence of vaso‐occlusive pain crises (VOC) and acute chest syndrome (ACS) among children with sickle cell anemia (SCA). Our objective was to assess relationship between levels adherence hydroxyurea clinical outcomes adolescents SCA. Methods This retrospective cohort study included Medicaid data (2005–2012) from Florida, Illinois, Louisiana, Michigan, South Carolina, Texas. The population consisted 1–17 years old SCA enrolled in for 3 years. Among...
Pregnancy and sickle cell disease (SCD) both individually carry a risk of thromboembolism (TE). in people with SCD may further enhance the prothrombotic effect underlying disease. The objectives this study were to determine rate factors for arterial venous thrombosis pregnant SCD. Administrative claims data from United States Centers Medicare Medicaid Service Analytic eXtract 2006 2018 used. population included start their first identified pregnancy until 1 year postpartum control cohort...
Abstract Background Sickle cell disease (SCD) is a severe and devastating hematological disorder that affects over 100,000 persons in the USA millions worldwide. Hydroxyurea primary disease-modifying therapy for SCD, with proven benefits to reduce both short-term long-term complications. Despite well-described inter-patient variability pharmacokinetics (PK), pharmacodynamics, optimal dose, hydroxyurea traditionally initiated at weight-based dose subsequent conservative escalation strategy...
Papillary thyroid carcinoma (PTC) is rare in children, although it a known secondary malignancy after treatment for neuroblastoma (NB). The interval between NB completion and PTC usually more than 5 years. A 4-year-old, female patient with high risk adrenal was found to have 2.9-cm, right nodule on surveillance chest computed tomography (CT) 6 months of her (induction chemotherapy, tumor resection, autologous stem cell transplantation, external beam radiation the abdominal site,...
Hydroxyurea (HU) is underutilized in children with sickle cell disease (SCD) because caregivers frequently decline HU when it offered. This study explores what impacts this decision. Caregivers of clinically severe SCD whose were offered previously interviewed. We used a qualitative analytical approach to analyze their telephone interview transcripts. who chose (n = 9) reported had SCD, sought detailed information about HU, and accepted as preventative therapy. In contrast, did not choose...