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Trusted Resources: Evidence & Education
Scientific literature and patient education texts
286 resources available:
Podcast: How New Gene Therapies for SCD May Impact Women’s Fertility
Foundation for Women & Girls with Blood Disorders Year: 2024
As we closed 2023, the Food and Drug Administration (FDA) approved two gene therapies to treat sickle cell disease (SCD). These potential curative therapies include CASGEVY™ (exagamglogene autotemcel [exa-cel]) from Vertex Pharmaceuticals Incorporated and CRISPER Therapeutics, and LYFGENIATM from bluebirdbio. While there is a lot of excitement for these advances, the impacts of these therapies are not currently known. Li...
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Sickle Cell Disease Association of America Inc. Year: 2023
Two gene therapies were recently approved by the Food and Drug Administration (FDA) to treat sickle cell disease: Casegevy from CRISPR/Vertex and Lyfgenia from bluebird bio. You probably have questions about these new treatment options. Read more below.
Is gene therapy a cure for sickle cell disease?
Gene therapy is a potentially curative therapy. This means that it could act as a cure, but it is too new to say...
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+myBinderI Believe in Therapy Campaign Presentation – 2023
Sickle Cell Disease Association of America, Inc Year: 2023
One unifying message in the sickle cell community is that our mental health is just as important as our physical health. Therefore as a community, we have to start recognizing that our mental health matters by prioritizing our emotional well-being, we open ourselves up to cope with the physical demands of sickle cell disease in a healthier way. We develop resilience, an acceptance of what we can and cannot control, and the tools to manage life...
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Prioritizing Mental Health as a Sickle Cell Warrior, Caregiver, and Healthcare Worker
As an individual living with sickle cell, caregiver, or healthcare worker, you may be accustomed to prioritizing physical health needs above all else. However, mental health is critical for overall well-being and should not be ignored. Although mental health challenges can be stigmatized and overlooked in the Black community, it is im...
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+myBinderEvidence-based interventions for reducing sickle cell disease-associated morbidity and mortality in sub-Saharan Africa: A scoping review
National Library of Medicine Year: 2023
Objective: Sickle cell disease is a lifelong illness affecting millions of people globally but predominantly burdensome in sub-Saharan Africa, where most affected children do not live to adulthood, despite available evidence-based interventions that reduce the disease burden in high-income countries....
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+myBinderSickle Cell Disease Coalition: Build Your Own SCD School Binder
Sickle Cell Disease Coalition Year: 2023
The Build Your Own SCD School Binder offers school personnel, students, caregivers, and other stakeholders a repository of evidence-based resources and recommended interventions to support the academic and biopsychosocial wellness of students living with SCD.
Resources included reflect a diversity of topics, perspectives, and needs. This toolkit is designed to provide a wealth information that may become relevant at different points of...
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491 resources available:
Evidence-based interventions for reducing sickle cell disease-associated morbidity and mortality in sub-Saharan Africa: A scoping review
National Library of Medicine Year: 2023
Objective: Sickle cell disease is a lifelong illness affecting millions of people globally but predominantly burdensome in sub-Saharan Africa, where most affected children do not live to adulthood, despite available evidence-based interventions that reduce the disease burden in high-income countries....
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Introduction:
Vaso-occlusive pain episodes (VOE) are the leading cause of emergency department (ED) visits & hospitalization in patients with sickle cell disease (SCD). During SCD-VOE, patients develop an acute arginine (Arg) deficiency. Supplementation with Arg has shown opioid-sparing effects, improves blood pressure & cardiopulmonary function & decreases length of hospital stay. Though we have previously...
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+myBinderPediatricians’ Disclosure and Documentation of Sickle Cell Trait Found on Newborn Screening: Barriers and Possible Implementation Strategies
Blood Year: 2022
Introduction:
All states in the US require hemoglobinopathy testing as part of the newborn screen (NBS) which incidentally identifies individuals with sickle cell trait (SCT). Each state has its own protocol for disclosure of SCT results to families (i.e., via primary care provider (PCP), public health nurse, direct mailing to family) with no standards for documentation in the electronic health record (EHR). Our past wo...
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+myBinderAssociation Between Periodontal Inflamed Surface Area and Serum Acute Phase Biomarkers in Patients With Sickle Cell Anemia
Archives of Oral Biology Year: 2022
Objectives:
The aim of the present cross-sectional study was to investigate the association between periodontal inflamed surface area (PISA) and serum inflammatory biomarkers in patients with sickle cell anemia.
Design:
Patients with sickle cell anemia (n = 80) and systemically healthy individuals (n = 80) were enrolled in the study. Crisis episodes were recorded and blood samples were co...
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+myBinderReal-World Effectiveness of Voxelotor for Treating Sickle Cell Disease in The US: A Large Claims Data Analysis
Expert Review of Hematology Year: 2022
Sickle cell disease (SCD) is a genetic disease that impacts patients’ quality of life, healthcare costs, and life expectancy. Elevated sickle hemoglobin (HbS), which readily polymerizes, causes red blood cell sickling, leading to chronic hemolytic anemia and complications often requiring hospitalization and transfusions. In 2019, voxelotor, which inhibits HbS polymerization, was approved for SCD treatment.
Sickle cell disease (SCD) i...
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+myBinderCOVID-19 and Sickle Cell Disease-Related Deaths Reported in the United States
Public Health Reports Year: 2022
Sickle cell disease (SCD) is associated with increased risk of poor health outcomes from respiratory infections, including COVID-19 illness. We used US death data to investigate changes in SCD-related mortality before and during the COVID-19 pandemic. We estimated annual age- and quarter-adjusted SCD-related mortality rates for 2014-2020. We estimated the number of excess deaths in 2020 compared with 2019 using the standardized mortality ratio...
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12 resources available:
Mental Health for BIPOC Summary
In addition to COVID-19, recent events have brought heightened attention to the specific stressors faced by Black, Indigenous and People of Color (BIPOC) communities, who may be experiencing heightened fear, anger and grief at this time. Consistent with the Guide’s mission to provide timely mental health resources, we highlight a range of resources that may be useful to BIPOC-identifying ind...
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+myBinderA Travel Guide for Adults With Sickle Cell Disease
South Thales Sickle Cell & Thalassaemia Network Year: N/A
People with sickle cell disease generally adapt well to air travel, but it can create difficulties for some. For this reason, it is important to plan ahead and know about potential problems so you can take preventative measures or deal with them should they occur.
Choose a travel agent that is registered with ABTA or ATOL. You will need to inform the airline, travel agent and insurance company that you have sickle cell disease. If you...
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+myBinder2019-2021 ASH Clinical Practice Guidelines on Sickle Cell Disease: What You Should Know
American Society of Hematology Year: 2021
The American Society of Hematology (ASH) believes it is essential to provide updated treatment guidelines that reflect the newest evidence about the disease, ensuring the medical community can better treat SCD and people living with SCD can make the best decisions for their care.
In partnership with the Evidence-Based Practice Research Program at Mayo Clinic, the 2019-2021 ASH Clinical Practice Guidelines on Sickle Cell Disease (SCD) w...
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+myBinderThe State-of-the-Art Methodology Behind New Sickle Cell Disease Guidelines
American Society of Hematology Year: 2019
Sickle cell disease (SCD) is an inherited blood disorder that affects the red blood cells and occurs when a person has inherited a sickle cell gene from each parent. The sickle-shaped red blood cells break apart easily, clump together, and stick to the walls of blood vessels, blocking the flow of blood and causing a range of complications, including severe pain, acute chest syndrome (a condition that affects the lungs), stroke, organ damage, a...
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+myBinderAmerican Society of Hematology 2020 Guidelines for Sickle Cell Disease: Management of Acute and Chronic Pain
Blood Advances Year: 2020
Objective:
These evidence-based guidelines developed by the American Society of Hematology (ASH) are intended to support patients, clinicians, and other health care professionals in pain management decisions for children and adults with SCD.
Methods:
ASH formed a multidisciplinary panel, including 2 patient representatives, that was thoroughly vetted to minimize bias from conflicts of int...
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+myBinderSickle cell pain in the emergency department
National Institute for Children’s Health Quality Year: 2015
Sickle cell disease is characterized by unpredictable episodes of extreme pain, known as acute vaso-occlusive episodes (VOE) or pain episodes, caused when sickled red blood cells are unable to move freely through blood vessels. In addition to pain, these changes at the cellular level can also lead to organ damage, stroke and even death. Pain episodes are the most common reason for emergency department (ED) visits and hospitalizations for patients...
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158 resources available:
Self‐Management Recommendations for Sickle Cell Disease: A Content Analysis of Websites
Wiley Online Library Year: 2020
This paper reports on the findings of a study designed to establish website‐based self‐management recommendations for sickle cell disease. Google and Yahoo search engines were used to search the World‐Wide‐Web. Purposive sampling was utilized to select 28 websites that met the inclusion criteria. Data were manually collected from health education materials and subjected to qualitative content analysis.
Self‐management was con...
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+myBinderGabapentin for Pain in Sickle Cell Disease: Results of a Randomized Phase ll Clinical Trial
American Society of Pediatric Hematology/Oncology Year: N/A
Background:
Pain in sickle cell disease (SCD) can have a significant neuropathic component. Therapies targeting neuropathic pain have not been extensively studied in this setting. We report results of a randomized controlled trial evaluating utility of gabapentin for acute vaso-occlusive crisis (VOC) pain.
Objectives:
The primary objective was to evaluate efficacy of gabapentin when added...
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+myBinderComparing Sickle Cell Disease Acute Pain Management in the Pediatric and Adult Emergency Department
American Society of Pediatric Hematology/Oncology Year: N/A
Background:
Vasoocclusive pain leading to frequent emergency department visits and hospital admissions are the hallmark of sickle cell disease (SCD). Adolescents with SCD are known to have higher rates of emergency department (ED) visits and transition to adult care are associated with significant challenges. Adults with SCD have reported higher rates of stigmatization and perception of neglect when receiving care....
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+myBinderVoxelotor in Adolescents and Adults With Sickle Cell Disease: Results of the Phase 3 Hope Trial
American Society of Pediatric Hematology/Oncology Year: N/A
Background:
Sickle cell disease (SCD) is an inherited disorder caused by a single amino acid substitution producing sickle hemoglobin (HbS). Deoxygenation of HbS causes polymer formation and red blood cell sickling, which lead to anemia, hemolysis, and vaso-occlusion. These clinical features contribute to the chronic and acute manifestations of SCD. Voxelotor is a once-daily oral therapy designed to modify HbS, interfer...
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+myBinderOpioid use is not associated with in-hospital mortality among patients with sickle cell disease in the United States
American Society of Hematology Year: 2018
Background:
Vaso-occlusive pain crises account for the majority of hospitalizations in patients with sickle cell disease (SCD), and opioids are the mainstay of chronic pain control in SCD.
The study sought to:
i) examine temporal trends in hospitalization rates and in-hospital mortality rates among adults with SCD
ii) compare in-hospital mortality rates for SCD with the rates of opioid prescription...
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+myBinderResults from Part A of the Hemoglobin Oxygen Affinity Modulation to Inhibit HbS Polymerization (HOPE) Trial (GBT440-031), a Placebo-Controlled Randomized Study Evaluating Voxelotor (GBT440) in Adults and Adolescents with Sickle Cell Disease
American Society of Hematology Year: 2018
Sickle cell disease (SCD) is a genetic disorder in which deoxygenation results in polymerization of mutated hemoglobin S (HbS) and triggers the downstream effects of red blood cell (RBC) deformation (sickling), hemolytic anemia, vaso-occlusion, inflammation, predisposition to infection, and chronic organ damage. Two distinct pathophysiologic mechanisms of SCD—severe anemia and vasculopathy—overlap to cause severe morbidity. Chronic anemia...
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48 resources available:
Mental Health for BIPOC Summary
In addition to COVID-19, recent events have brought heightened attention to the specific stressors faced by Black, Indigenous and People of Color (BIPOC) communities, who may be experiencing heightened fear, anger and grief at this time. Consistent with the Guide’s mission to provide timely mental health resources, we highlight a range of resources that may be useful to BIPOC-identifying ind...
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The chronic and potentially debilitating nature of SCD can pose significant challenges for the inpatient management of this patient population. A multidisciplinary hospital team comprised of hospitalists, hematologists, case management, social workers, nursing, and pharmacy must work together collaboratively to improve outcomes for these patients. Patients with SCD face physical, psychosocial, and socioeconomic challenges. Chronic pain with ac...
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Several different types of resources are included. These resources are designed to be beneficial for healthcare professionals (e.g. physicians, nurses, nurse practitioners, physician assistants) who are not sickle cell experts and practice in a variety of settings (e.g. hospitals, primary care clinics, and emergency departments).
• “SCD Conferences” include select presentations from a two day, yearly SCD conference held at Du...
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+myBinderLay Summary of “Quality of care in sickle cell disease: Cross-sectional study and development of a measure for adults reporting on ambulatory and emergency department care”
Medicine Year: 2016
Rationale: The rationale for this article is that one of the most important ways to measure the quality of healthcare is to ask the individuals who actually receive the care. It is beneficial to have a survey that can be easily understood, tells about what people experience and can be used in different places to allow comparisons. In some cases, standard surveys like the Consumer Assessments of Health Care Providers and Systems (CAHPS) and the...
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+myBinderMedicaid and CHIP Sickle Cell Disease Report, T-MSIS Analytic Files (TAF) 2017
Centers for Medicare and Medicaid Services Year: 2021
Sickle cell disease (SCD), the most prevalent lifelong inherited blood disorder in the United States, causes the body to produce red blood cells shaped like crescents or sickles rather than discs. These sickle-shaped blood cells tend to stick to vessel walls leading to blockage and impeding blood flow. When this occurs, oxygen is not delivered to body tissues, which ultimately leads to severe acute and chronic pain episodes known as crises....
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+myBinderManagement of the Sickle Cell Spectrum in Basketball Players
Basketball Sports Medicine and Science Year: 2020
Sickle cell spectrum includes sickle cell trait (SCT) and sickle cell disease (SCD) and manifestations range from relatively benign to life threatening. SCT is common affecting almost 3,000,000 Americans and SCD affects approximately 100,000. There are important considerations for sports, exercise, and conditioning in individuals on the sickle cell spectrum. This chapter explores the epidemiology and pathogenesis of SCT and SCD and reviews the...
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