Psychosocial Neglect and the Rise in Psychosis Among Adults With Sickle Cell Disease in Little Caribbean, NY
To evaluate the prevalence of psychosocial neglect and patterns of under-recognized psychosis among young adults with sickle cell disease (SCD) and to examine their impact on treatment, pain reduction, and...
A Standardized Sickle Cell Admission Order Set in the Electronic Medical Record to Improve Outcomes in Patients With Sickle Cell Pain Crisis: A Quality Improvement Project
To evaluate whether implementation of a standardized electronic medical record (EMR) admission order set could improve hospitalization outcomes for patients admitted with sickle cell pain crisis.
Clinical Predictors for the Variability of Urine Albumin Concentration in Patients With Sickle Cell Disease
To investigate whether vaso-occlusive episodes (VOE) and other clinical factors influence variability in urine albumin-to-creatinine ratio (UACR) in patients with sickle cell disease (SCD).
Fat Embolism Syndrome in Three Adolescents With Sickle Cell Disease
To describe clinical presentation, diagnostic challenges, and management of fat embolism syndrome (FES) in adolescents with sickle cell disease (SCD).
Comparative Assessment of Biologic (Flow Adhesion of Whole Blood to P-selectin) and Clinical Response to Crizanlizumab in a Real-world Clinical Setting
To evaluate whether a biologicmarker — flow adhesion of whole blood to P-selectin (FA-WB-PSEL) — correlates with clinical outcomes inpatients with sickle cell disease treated with crizanlizumab.
Altered Resting-State Functional Connectivity in Sickle Cell Disease: Insights Into Pain Sensitivity and Cerebral Hemodynamics
To investigate whether alterations in resting-state functional connectivity are associated with pain sensitivity and cognitive changes in sickle cell disease (SCD).
Non-Myeloablative Hematopoietic Cell Transplantation Improves Organ Morphology and Function in a Murine Model of Sickle Cell Disease
To assess whether non-myeloablative hematopoietic cell transplantation can affect the progression of multi-organ damage in a preclinical sickle cell disease model.
Correlation of Noninvasive Hemoglobin Measurement to Vaso-occlusive Crises in Patients With Sickle Cell Disease
To evaluate whether frequent home-based hemoglobin monitoring using nailbed optical measurement via a smartphone application could identify physiologic trends associated with the onset of vaso-occlusive crises in adults with sickle...
Levagen+ Ameliorates Hyperalgesia in a Mouse Model of Sickle Cell Disease
To evaluate whether palmitoylethanolamide (PEA), a non-intoxicating lipid mediator related to cannabinoid signaling, could reduce pain hypersensitivity and inflammatory activity in sickle cell disease (SCD).
Transition to Adult Sickle Cell Disease Care: A Project ECHO Learning Series for Healthcare Professionals
To evaluate whether a structured Project ECHO virtual learning series could improve healthcare professionals’ knowledge and confidence in facilitating transition from pediatric to adult care for patients with sickle cell...
Etavopivat Reduces Incidence of Vaso-occlusive Crises in Patients With Sickle Cell Disease: Hibiscus Trial Phase 2 Results through 52 Weeks
To evaluate the efficacy and safety of etavopivat, a selective activator of red blood cell pyruvate kinase, in patients with sickle cell disease (SCD). Etavopivat improves red cell energy metabolism...
Transition to Adult Sickle Cell Disease Care: A Project ECHO Learning Series for Healthcare Professionals
To evaluate whether a structured Project ECHO virtual learning series could improve healthcare professionals’ knowledge and confidence in facilitating transition from pediatric to adult care for patients with sickle cell...
Soluble C5b-9 as a Biomarker for Hemolysis-Associated Complications in Sickle Cell Disease
To evaluate soluble C5b-9 (sC5b-9), a marker of terminal complement activation, as a biomarker for hemolysis-associated complications in sickle cell disease (SCD).
Placental Contributions to Pregnancy Outcomes in the Townes Mouse Model of Sickle Cell Disease
To investigate how placental pathology contributes to adverse pregnancy outcomes in sickle cell disease (SCD).
Non-Genotoxic Conditioning to Improve Donor Chimerism in a Mismatched Murine Transplant Model for Sickle Cell Disease
To evaluate whether non-genotoxic antibody-drug conjugate (ADC) conditioning can support donor hematopoietic engraftment in a murine sickle cell disease (SCD) transplant model.
A Phase 1b, Open-label, Multiple-Dose Study Evaluating Safety, Pharmacokinetics (PK), and Pharmacodynamics (PD) of Pociredir in Patients With Sickle Cell Disease (SCD): Trial Design
To assess safety, pharmacokinetics (PK), pharmacodynamics (PD), and biologic activity of pociredir in patients with SCD, including effects on fetal hemoglobin (HbF) and hemolysis.
Breast cancer screening in women with SCD: a single-center exploratory study
To evaluate breast cancer screening utilization and mammographic characteristics among women living with sickle cell disease (SCD).
Preliminary observations on cerebral blood flow and pain sensitivity in adults with SCD
To explore the relationship between cerebral blood flow (CBF) and pain sensitivity in adults with sickle cell disease (SCD).
An international multicenter cohort shows sickle cell disease is no longer uniformly associated with low body weight, with persistent undernutrition alongside increasing overweight and obesity across age groups, genotypes, and countries.
To characterize body mass index (BMI) distribution and associated clinical factors in individuals with sickle cell disease across diverse global settings.
Elevated ambient nitrogen dioxide (NO₂) levels were associated with greater odds of abnormal pulmonary function tests in children and young adults with sickle cell disease (SCD), highlighting an environmental factor that may influence respiratory health in this population.
To evaluate whether ambient air pollution exposures, particularly criteria pollutants, are associated with abnormal pulmonary function tests (PFTs) among young people living with SCD.
A 5-year-old girl with sickle cell disease (Hb SS) and poor hydroxyurea adherence developed concurrent warm autoimmune hemolytic anemia (wAIHA), splenic sequestration, and hyperhemolysis/delayed hemolytic transfusion reaction after transfusion, illustrating the complexity of immune-mediated hemolysis and the role of multidisciplinary, phenotype-matched intervention.
To present a clinical case illustrating the diagnostic and therapeutic challenges when multiple severe hemolytic complications of SCD converge in a single pediatric patient.
In chronically transfused adults with sickle cell disease (SCD), a retrospective analysis found that a substantial subgroup experienced sleep-associated hemoglobin desaturation (SpO₂ ≤ 88% for ≥5 minutes), which was associated with markers of hemolysis and inflammation, underscoring the need to consider sleep-related hypoxemia in comprehensive SCD care.
To characterize the prevalence and clinical correlates of nocturnal hemoglobin desaturation (NHD) in adults with SCD managed with chronic red blood cell exchange transfusion.
A pooled analysis of Phase 2 and Phase 3 clinical trials provides a detailed safety profile of crizanlizumab 5.0 mg/kg in sickle cell disease (SCD), showing predominantly mild to moderate adverse events alongside infrequent but notable serious infections and bleeding events.
To evaluate the safety of crizanlizumab 5.0 mg/kg by pooling adverse-event data across multiple clinical trials in individuals with SCD.
A retrospective analysis of Medicaid-insured children with sickle cell disease (SCD) found that those with longer continuous coverage had significantly better adherence to oral Hydroxyurea (HU), underscoring the role of stable insurance and continuity in optimizing SCD therapy.
To investigate whether the length of continuous Medicaid enrollment (12- vs. 24-month coverage) affects adherence to hydroxyurea among children with SCD.
Advanced neuroimaging in adults with sickle cell disease (SCD) revealed elevated cerebral blood flow (CBF), reduced cortical amplitude of low-frequency fluctuation (ALFF), increased white-matter ALFF, and altered functional connectivity — patterns associated with slower cognitive processing and higher pain sensitivity.
To characterize CBF, ALFF, and resting-state functional connectivity in adults with SCD compared with matched healthy controls, and relate these measures to cognition and pain sensitivity.
This study describes 46 children and adolescents with SCD who met criteria for high-impact chronic pain (HICP) at the time of hematopoietic cell transplant (HCT) consultation, highlighting significant pain burden, healthcare utilization, and clinical complexity within this referred subgroup.
To characterize the clinical phenotype of HICP among children and adolescents with SCD referred for HCT consultation, including pain frequency, healthcare utilization (HCU), analgesic exposure, and comorbidities such as AVN.
A preclinical study in humanized sickle-cell mice found that older animals exhibited heightened evoked and non-evoked pain-related behaviors along with age-associated gene-expression changes data that may help inform future research on aging and pain in SCD.
To examine how increasing age influences pain-related behaviors and associated gene-expression patterns in a humanized sickle cell disease mouse model (HbSS-BERK).
Adults with sickle cell shared visual and narrative reflections in a virtual photovoice study, highlighting how pain and self-care shape their daily lives
To capture and interpret adult perspectives on living with sickle cell (SCD) through a virtual photovoice methodology, with the aim of informing patient-centred clinical practice and care design.
A feasibility study in adults with sickle cell disease (SCD) found high acceptability and successful collection of salivary stress biomarkers, paving the way for research linking psychosocial stress and biological responses.
To assess the acceptability and practical feasibility of collecting salivary specimens for stress biomarkers (cortisol, alpha-amylase) in people living with SCD.
Interviews with 19 older adults with sickle cell disease (SCD) reveals aging challenges and wisdom for management of sickle cell and healthy aging.
To describe the aging experiences and priorities of adults with SCD aged ≥50 so clinicians can deliver better care for this growing population.
Study finds improvement in emergency medicine (EM) residents’ knowledge after a 40-minute lecture on sickle cell disease (SCD)
To evaluate whether a brief, structured educational intervention could improve EM residents’ knowledge and perceptions about SCD.
National Alliance of Sickle Cell Centers (NASCC) practice recommendations establish standardized criteria for sickle cell disease (SCD) care delivery
NASCC used a systematic, modified RAND/UCLA Delphi method to develop consensus-driven clinical practice recommendations for SCD. This process incorporated expert judgment alongside data from the Globin Research Network for Data...
Survey of U.S. Clinicians’ attitudes toward palliative care (PC) to enhance the quality of life for patients with sickle cell disease (SCD)
To assess clinician attitudes, referral practices, and barriers affecting the integration of PC in SCD management.
Studies Indicate That Dalcetrapib Shows in Vitro Antisickling Effects and Strong RBC Partitioning for β-chain Cys93 Allosteric Regulation of Hemoglobin
Review preclinical and translational evidence for targeting β-chain Cysteine-93 (βCys93) as an allosteric regulator of hemoglobin affinity and as a potential antisickling strategy distinct from α-chain modulators (e.g., voxelotor).
Study Finds Rare Atypical Bacteria in Pediatric SCD ACS, Underscoring Limited Utility of Empiric Macrolides
To determine the prevalence of atypical bacterial pathogens in children with sickle cell disease (SCD) presenting with acute chest syndrome (ACS) or pneumonia.
Study Suggests Psychological Stress Destabilizes Blood Pressure Control in Sickle Cell Disease, Potentially Contributing to Vaso-Occlusive Crises
To investigate whether hydroxyurea (HU) modulates expression of transcriptional repressors that silence fetal γ-globin genes, thereby clarifying the molecular mechanism of HbF induction.
Hydroxyurea Decreases BCL11A and ZBTB7A/LRF Expression in Erythroid Cells, Including Human Progenitors, Providing Support in Raising Fetal Hemoglobin Levels in Sickle Cell Disease
To investigate whether hydroxyurea (HU) modulates expression of transcriptional repressors that silence fetal γ-globin genes, thereby clarifying the molecular mechanism of HbF induction.
Neutrophil Phagocytic Activity Found Impaired in A Study of Sickle Cell Patients With Transfusion History
To compare the ability of neutrophils from individuals with sickle cell anemia (SCA) versus controls to perform phagocytosis (uptake of foreign particles), and to assess how transfusion exposure affects neutrophil...
Study Offers Preliminary Validity for Functional Status-Based Pain Assessment (FSPA) in Adults Hospitalized With Sickle Cell Disease Vaso-Occlusive Crises.
Evaluate preliminary validity of a daily functional status pain assessment (FSPA) tool for adults with sickle cell disease (SCD) during vaso-occlusive crises (VOCs), with the aim of enhancing discharge readiness...
Study Finds Specific Biomarkers to Predict Sickle Cell Anemia Disease Severity
To identify hematological, biochemical, and metabolic biomarkers associated with sickle cell anemia (SCA) severity and to assess machine learning models' ability to predict disease severity accurately.
Study Indicates Potential Link Between Chronic Transfusion and Higher Nocturnal Hemoglobin Desaturation (NHD) Rates in Adults With SCD
Assess prevalence of nocturnal hemoglobin desaturation (NHD) among adults with severe sickle cell disease (SCD) who receive chronic red blood cell exchange (RCE) transfusions. NHD related complications can significantly affect...
Study Indicates Adverse Childhood Experiences (ACEs) are Associated With a Higher Prevalence of Asthma Among Children and Adolescents With Sickle Cell Disease.
To examine the relationship between Adverse Childhood Experiences (ACEs) and asthma among children and adolescents with Sickle Cell Disease (SCD).
Children with sickle cell disease may experience nocturnal hypoxemia even without sleep apnea.
Retrospective study reviewed 81 pediatric SCD patients referred for polysomnography to explore factors associated with nocturnal hypoxemia (NH), independent of obstructive sleep apnea (OSA).
Recent report suggests buprenorphine may offer a viable option for chronic pain management in sickle cell disease during vaso-occlusive crises.
A recent study explored real-world experiences from a single-center case series of adults with sickle cell disease transitioned from full opioid agonists to buprenorphine for chronic pain management.
The Role of Primary Care Physicians in Back-to-School Preparations
Primary care physicians are essential partners in back-to-school preparation for students living with sickle cell disease.
How Community Health Workers Support Children with Sickle Cell Disease
Community Health Workers play a vital role in supporting families of children with sickle cell disease as they transition back to school by providing personalized education and outreach.
The Role of Nurse Coordinators in Sickle Cell Disease Care
Myth: Care coordinators, including nurses, are not essential — patients or families can manage coordination on their own.
Best Practices for Improving Healthcare Accessibility for Sickle Cell Disease Patients
Myth: Comprehensive sickle cell disease care can be effectively managed by a single provider without the need for a multidisciplinary or team-based approach.
Transitioning Patients with Sickle Cell Disease to Adult Care
Myth: The transition from pediatric to adult healthcare is typically unimportant and has little impact on an adolescent’s overall development.
The Need for Primary Care Physicians and Nurses in Sickle Cell Disease Care
Myth: Primary care has a limited role in sickle cell disease care.
The Need for Nurses and Community Health Workers in Sickle Cell Disease Care
Myth: General clinical training is enough; there’s no need for disease-specific workforce development in sickle cell care.
Real-World Impact of Well-Trained Providers
Myth: Technology like telemedicine or digital tools doesn’t impact sickle cell disease care.
Sharing Personal Stories: Kelsey and Shandrea
Myth: There are no new learning opportunities or advanced training programs for clinical providers in sickle cell disease care.
Sharing Personal Stories: Nicholas and Kellyn
Myth: Only bone marrow transplants from matched donors can cure sickle cell disease.
Sharing Personal Stories: Joao and Devonte
Myth: Gene therapy for sickle cell disease is science fiction and not available to patients.
Surveillance and Monitoring
Myth: Public health efforts cannot reduce gaps in sickle cell disease care.
Healthcare Access and Transition Support
Myth: Workforce development programs for sickle cell disease are unnecessary because existing healthcare training is sufficient.
Education, Awareness, and Multifaceted Care
Myth: Public health professionals have a limited role in sickle cell disease care.
Newborn Screening and Social Support
Myth: Community health workers are not qualified to support sickle cell disease care.
Addressing Sickle Cell Disease Knowledge and Infection Control
Myth: Standard infection control measures are sufficient for sickle cell disease patients.
Addressing Transiting to Adult Care and whether Sickle Cell Disease is Contagious
Myth: Sickle Cell Disease is a contagious blood-borne illness.
Addressing Absenteeism and Hydroxyurea
Myth: Hydroxyurea is only for patients with severe sickle cell disease.
Pain Management and a Prepared Workforce
Optimal sickle cell disease treatment requires a multidisciplinary team delivering comprehensive care.