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Sickle Cell Disease

Comprehensive Care Model and Integrated Sickle Cell Disease-Pulmonary Clinic Improves Access and Outcomes
 Comprehensive Care Model and Integrated Sickle Cell Disease-Pulmonary Clinic Improves Access and Outcomes 1024 683 Jessica Nye, PhD
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A comprehensive care model which incorporates pulmonology services in the sickle cell disease (SCD) clinic aims to reduce access barriers and improve outcomes.   “Our sickle cell clinic at Nationwide Children’s Hospital used to see patients just for their comprehensive [sickle cell] care. One of the biggest morbidities and causes for mortality in patients with…

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Virtual Support for Educating Parents of Newborns with Sickle Cell Trait
 Virtual Support for Educating Parents of Newborns with Sickle Cell Trait 1024 681 Mary Bates, PhD
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Black couple with newborn

A supplementary videoconferencing program engages parents and reduces worry about sickle cell trait status. Nearly 3 million people in the U.S. have sickle cell trait (SCT), in which they inherit one sickle cell gene and one normal gene. Individuals with SCT are usually asymptomatic; however, two parents with SCT have a 25% chance of having…

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Featured Researcher — Sarah O’Brien, MD
 Featured Researcher — Sarah O’Brien, MD 150 150 Katie Brind'Amour, PhD, MS, CHES
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The lab of Sarah O’Brien, MD, principal investigator in the Center for Child Health Equity and Outcomes Research at Nationwide Children’s Hospital, operates at the intersection of hematology and women’s health. Dr. O’Brien, who also leads the Young Women’s Hematology Clinic at Nationwide Children’s, applies her interests in big data and epidemiology to increase recognition…

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Hydroxyurea Dose and Adherence Affect Hematologic Outcomes in Children With Sickle Cell Disease
 Hydroxyurea Dose and Adherence Affect Hematologic Outcomes in Children With Sickle Cell Disease 1024 683 JoAnna Pendergrass, DVM
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Optimal hydroxyurea dosing and medication adherence can improve hematologic outcomes for children with sickle cell anemia.   For pediatric patients with sickle cell anemia, hydroxyurea is highly effective at reducing disease complications. However, it can be challenging for these patients to take hydroxyurea for the long term. “There are many barriers to medication adherence in…

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Improving Neuro-Critical Care Outcomes for Children in Sub-Saharan Africa
 Improving Neuro-Critical Care Outcomes for Children in Sub-Saharan Africa 1024 683 Abbie Miller
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Nicole O'Brien, MD

Nicole O’Brien, MD, is working with health experts in sub-Saharan Africa to develop Centers of Excellence for the use of transcranial doppler ultrasound (TCD).   The first time Nicole O’Brien went to Africa, she was not a doctor. In her words, she “wasn’t even close to medical.” She was staying in a small rural village…

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Novel Use of Vedolizumab Resolves Steroid-Refractory Acute Graft-Versus-Host Disease in a Pediatric Transplant Recipient
 Novel Use of Vedolizumab Resolves Steroid-Refractory Acute Graft-Versus-Host Disease in a Pediatric Transplant Recipient 1024 575 Lauren Dembeck
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Vedolizumab is a monoclonal antibody that targets α4β7 integrin present on gut homing T cells and is indicated for adult inflammatory bowel disease Physicians at Nationwide Children’s Hospital have successfully treated steroid-refractory gastrointestinal acute graft-versus-host disease (SR GI aGVHD) with adjuvant vedolizumab therapy in a pediatric allogeneic hematopoietic cell transplant (HCT) recipient. The case was…

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Collaborative Study Seeks to Understand Gene Expression Changes During Acute Events in Patients With SCD
 Collaborative Study Seeks to Understand Gene Expression Changes During Acute Events in Patients With SCD 1024 575 Natalie Wilson
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Researchers explore gene responses among SCD patients hospitalized for acute complications to inform understandings of the under-studied disease. Sickle cell disease (SCD) is a chronic, genetic disorder characterized by structural changes in circulating red blood cells. According to the CDC, SCD affects approximately 100,000 individuals in the United States alone and accounts for 3,000 births…

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Helping Children With Sickle Cell Disease Adhere to Their Medication
 Helping Children With Sickle Cell Disease Adhere to Their Medication 1024 575 Mary Bates, PhD
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Mobile intervention increases medication adherence in the children who engage with it. A study published in JMIR mHealth uHealth shows that an electronically delivered intervention can improve medication adherence in children with sickle cell disease. Hydroxyurea is a life-changing medication for children with sickle cell disease (SCD). However, many patients may not consistently receive their hydroxyurea. To…

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Kidney Biopsy Analysis Reveals High Risk for Disease in Patients With Sickle Cell Disease
 Kidney Biopsy Analysis Reveals High Risk for Disease in Patients With Sickle Cell Disease 1024 732 Mary Bates, PhD
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Patients with SCD are at high risk for significant kidney disease. A retrospective study of biopsy findings from the Pediatric Nephrology Research Consortium shows just how high. Kidney damage is a progressive complication of sickle cell disease (SCD), sometimes eventually leading to kidney failure. As the life expectancy of individuals with SCD has improved, the…

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Is Caregiver Education About Sickle Cell Trait Effective?
 Is Caregiver Education About Sickle Cell Trait Effective? 1024 575 Abbie Miller
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Color photo of Black father holding infant on shoulder in front of nursery background with clouds on the wall

Researchers evaluate the standardized education in Ohio to determine if it achieves high caregiver knowledge. Despite universal newborn screening that detects the presence of sickle cell trait (SCT), only 16 percent of Americans with SCT know their status. To address this issue, in Ohio, in-person education is offered to caregivers of referred infants with SCT.…

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Starting the Conversation on Sickle Cell Disease and Reproductive Health
 Starting the Conversation on Sickle Cell Disease and Reproductive Health 1024 575 Katie Brind'Amour, PhD, MS, CHES
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Adolescents and young adults with sickle cell disease — and their caregivers — care about future fertility. But what should doctors tell them? Until just a few decades ago, sickle cell disease (SCD) was often fatal in childhood. Now that more patients reach adulthood, clinicians and researchers need to ask — and answer — questions…

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Making Stem Cell Transplantation Work for Sickle Cell Disease
 Making Stem Cell Transplantation Work for Sickle Cell Disease 150 150 Mary Bates, PhD
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New regimen offers a promising approach for unrelated donor transplants. Sickle cell disease (SCD) is a blood disorder affecting 1 in every 500 African-American newborns. It is characterized by extreme pain and decreased longevity. Currently, the only cure for SCD lies in hematopoietic stem cell transplantation. A well-matched sibling donor is needed for the best…

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Sickle Cell Disease: Global Disparities in Prevalance and Outcomes
 Sickle Cell Disease: Global Disparities in Prevalance and Outcomes 150 150 Abbie Miller
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Unique challenges exist for people with sickle cell disease depending on where they live. An estimated 300,000 to 500,000 babies worldwide are born with sickle cell disease (SCD) each year. In Africa and India, where SCD is most prevalent, newborn testing is not performed, and many children with sickle cell disease die before they are…

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Treating Sickle Cell Disease in the United States
 Treating Sickle Cell Disease in the United States 1024 575 Abbie Miller
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While people with sickle cell disease have better outcomes in the United States and other Western countries, progress in treating the disease has been slow moving. Sickle cell disease is marked by painful sickle cell crises, in which sickle-shaped cells get distorted in the small vessels and cause problems including disrupting blood flow and a…

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