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Capacity Building for Primary Stroke Prevention Teams in Children Living with Sickle Cell Anemia in Africa
We describe capacity-building strategies in conjunction with two National Institutes of Health-funded primary stroke prevention trials (a feasibility trial and phase III randomized controlled trial) with initial hydroxyurea treatment for children with SCA and abnormal transcranial Doppler (TCD) velocities in Nigeria.
Source: Pediatric Neurology - September 3, 2021 Category: Neurology Authors: Djamila L. Ghafuri, Brittany Covert Greene, Bilya Musa, Awwal Gambo, Abdulrasheed Sani, Shehu Abdullahi, Binta J. Widil, Halima Bello-Manga, Safiya Gambo, Matin Ghafuri, Holly Cassell, Kathleen Neville, Fenella Kirkham, Adetola A. Kassim, Muktar H. Aliyu, Tags: Research Paper Source Type: research

Hydroxycarbamide versus chronic transfusion for maintenance of transcranial doppler flow velocities in children with sickle cell anaemia—TCD With Transfusions Changing to Hydroxyurea (TWiTCH): a multicentre, open-label, phase 3, non-inferiority trial
This study is registered with ClinicalTrials.gov, number NCT01425307. Findings Between Sept 20, 2011, and April 17, 2013, 159 patients consented and enrolled in TWiTCH. 121 participants passed screening and were then randomly assigned to treatment (61 to transfusions and 60 to hydroxycarbamide). At the first scheduled interim analysis, non-inferiority was shown and the sponsor terminated the study. Final model-based TCD velocities were 143 cm/s (95% CI 140–146) in children who received standard transfusions and 138 cm/s (135–142) in those who received hydroxycarbamide, with a difference of 4·54 (0·10–8·98). Non-i...
Source: The Lancet - December 7, 2015 Category: Journals (General) Source Type: research

Prevention of central nervous system sequelae in sickle cell disease without evidence from randomized controlled trials: the case for a team-based learning collaborative.
Authors: DeBaun MR, King AA Abstract Since 1998, the National Institutes of Health has funded 5 randomized controlled trials (RCTs) for primary and secondary prevention of strokes in children with sickle cell anemia (SCA). In a systematic fashion, these trials have significantly advanced the care of children with SCA. In the absence of an RCT, clinicians are often compelled to make decisions at the bedside, based on experience, observational studies, and principles of hematology. We will provide an initial example that describes how a team-based, learning collaborative developed a multisite standard care protocol w...
Source: Hematology ASH Education Program - December 4, 2016 Category: Hematology Tags: Hematology Am Soc Hematol Educ Program Source Type: research

Monthly blood transfusions reduce sickle cell anemia-related brain injury in children
(NIH/National Institute of Neurological Disorders and Stroke) Regular blood transfusions prevent recurrent blockage of brain blood vessels, a serious neurological side effect that occurs in one third of children with sickle cell anemia, according to a study funded by the National Institutes of Health. The findings appear in the Aug. 21 issue of the New England Journal of Medicine.
Source: EurekAlert! - Social and Behavioral Science - August 20, 2014 Category: Global & Universal Source Type: news

Reducing Health Care Disparities in Sickle Cell Disease: A Review.
Authors: Lee L, Smith-Whitley K, Banks S, Puckrein G Abstract Sickle cell disease (SCD) is an inherited blood disorder most common among African American and Hispanic American persons. The disease can cause substantial, long-term, and costly health problems, including infections, stroke, and kidney failure, many of which can reduce life expectancy. Disparities in receiving health care among African Americans and other racial/ethnic minority groups in the United States are well known and directly related to poor outcomes associated with SCD. As an orphan disease-one that affects <200 000 persons nationwide-SCD ...
Source: Public Health Reports - October 11, 2019 Category: International Medicine & Public Health Tags: Public Health Rep Source Type: research

The Director of the NIH Lays Out His Vision of the Future of Medical Science
Our world has never witnessed a time of greater promise for improving human health. Many of today’s health advances have stemmed from a long arc of discovery that begins with strong, steady support for basic science. In large part because of fundamental research funded by the National Institutes of Health (NIH), which traces its roots to 1887, Americans are living longer, healthier lives. Life expectancy for a baby born in the U.S. has risen from 47 years in 1900 to more than 78 years today. Among the advances that have helped to make this possible are a 70% decline in the U.S. death rate from cardiovascular disease ...
Source: TIME: Science - October 24, 2019 Category: Science Authors: Dr. Francis S. Collins Tags: Uncategorized Healthcare medicine Source Type: news

These Sisters With Sickle Cell Had Devastating, and Preventable, Strokes
Kyra and Kami never got a simple test that could have protected them. Their story exemplifies the failure to care for people with the disease, most of whom are Black.
Source: NYT Health - May 24, 2021 Category: Consumer Health News Authors: Gina Kolata and Ilana Panich-Linsman Tags: Stroke Tests (Medical) Preventive Medicine Ultrasonic Imaging and Sonograms Genetics and Heredity Transfusions Sickle Cell Anemia Black People Children and Childhood Race and Ethnicity Doctors National Institutes of Health Source Type: news

Family in Nigeria Lost 3 Daughters to Sickle Cell. Can They Save a Fourth?
About 150,000 babies are born each year in Nigeria with sickle cell, a deadly disease. Tens of thousands of them die annually before their fifth birthdays.
Source: NYT Health - December 21, 2021 Category: Consumer Health News Authors: John Eligon, Ismail Alfa and KC Nwakalor Tags: Sickle Cell Anemia Tests (Medical) Stroke Blood Genetics and Heredity National Institutes of Health DeBaun, Michael R Africa Nigeria Kano (Nigeria) The Lancet Deaths (Fatalities) Children and Childhood Drugs (Pharmaceuticals) Source Type: news