[HTML][HTML] Improving outcomes for patients with sickle cell disease in the United States: making the case for more resources, surveillance, and longitudinal data

J Kanter, ER Meier, JS Hankins… - JAMA Health …, 2021 - jamanetwork.com
Importance Although considered a rare disease with fewer than 200 000 cases annually in
the US, sickle cell disease (SCD) is the most common and clinically significant inherited …

Race based medicine, colorblind disease: how racism in medicine harms us all

R Yearby - The American Journal of Bioethics, 2021 - Taylor & Francis
The genome between socially constructed racial groups is 99.5%–99.9% identical; the 0.1%–
0.5% variation between any two unrelated individuals is greatest between individuals in the …

An integrative review: The evolution of provider knowledge, attitudes, perceptions and perceived barriers to caring for patients with sickle cell disease 1970–Now

J Reich, MA Cantrell… - Journal of Pediatric …, 2023 - journals.sagepub.com
Approximately 100,000 Americans have sickle cell disease (SCD). In the USA, the majority
of patients with SCD are of African descent. Due to persistent racial and ethnic disparities in …

Building access to care in adult sickle cell disease: defining models of care, essential components, and economic aspects

J Kanter, WR Smith, PC Desai, M Treadwell… - Blood …, 2020 - ashpublications.org
Sickle cell disease (SCD) is the most common inherited blood disorder in the United States.
It is a medically and socially complex, multisystem illness that affects individuals throughout …

Identifying barriers to evidence-based care for sickle cell disease: results from the Sickle Cell Disease Implementation Consortium cross-sectional survey of healthcare …

MP Smeltzer, KE Howell, M Treadwell, L Preiss… - BMJ open, 2021 - bmjopen.bmj.com
Objectives Sickle cell disease (SCD) leads to chronic and acute complications that require
specialised care to manage symptoms and optimise clinical results. The National Heart …

Use of disease-modifying treatments in patients with sickle cell disease

TV Newman, J Yang, K Suh, CR Jonassaint… - JAMA Network …, 2023 - jamanetwork.com
Importance Despite hydroxyurea being an established treatment for sickle cell disease
(SCD), it remains underused. The recent approval of the disease-modifying treatments …

Barriers to care for persons with sickle cell disease: The case manager's opportunity to improve patient outcomes

J Brennan-Cook, E Bonnabeau, R Aponte… - Professional case …, 2018 - journals.lww.com
ABSTRACT Purpose and Objectives: The purpose of this discussion is to review the barriers
to care for patients with sickle cell disease (SCD). Chronic pain and the perception of …

Sickle-cell disease co-management, health care utilization, and hydroxyurea use

N Crego, C Douglas, E Bonnabeau… - The Journal of the …, 2020 - Am Board Family Med
Background: Sickle-cell disease (SCD) causes significant morbidity, premature mortality,
and high disease burden, resulting in frequent health care use. Comanagement may …

Caregiver experiences with accessing sickle cell care and the use of telemedicine

SA Jacob, R Daas, A Feliciano, JE LaMotte… - BMC Health Services …, 2022 - Springer
Background Sickle cell disease (SCD) is associated with a wide range of complications.
However, a multitude of barriers prevent SCD patients from receiving adequate healthcare …

Trends in sickle cell disease mortality: 1979–2020

KA Karkoska, PT McGann - Pediatrics, 2024 - publications.aap.org
METHODS We analyzed publicly available data from the Centers for Disease Control and
Prevention WONDER database, a compilation of national-level mortality statistics from 1979 …