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Annelizabeth ’s story: Care that feels like home, close to home
When you’re 5, it’s nice to have a place that feels like a second home. Where there are lots of hugs. And songs. And games. And you can curl up and watch “Frozen,” your favorite movie. For Annelizabeth Jean-Baptiste, a spunky Waltham kindergartener, that place is Boston Children’s Hospital at Waltham. Annelizabeth, or Annie (but never Anna, she says), first came to Boston Children’s at Waltham two weeks after she was born. Her mother Elcie wasn’t expecting that her fourth child would need special care. “It was a difficult pregnancy. I was very excited and relieved when she was born.” But that sense of rel...
Source: Thrive, Children's Hospital Boston - August 29, 2016 Category: Pediatrics Authors: Lisa Fratt Tags: Our Patients’ Stories Boston Children's at Waltham Dr. Rachael Grace sickle cell disease Source Type: news

Burden and Risk of Neurological and Cognitive Impairment in Pediatric Sickle Cell Anemia in Uganda (BRAIN SAFE): Final Results of the Cross-Sectional Analysis
Conclusions: These data demonstrate early, frequent neurovascular pathology for each outcome tested. Abnormal neurocognitive test results significantly increased with age or non-normal TCD. Our findings provide a baseline for longitudinal assessment and incentive for intervention. Enhanced research capacity was gained for junior faculty, trainees and staff, in areas of the conduct of brain research and focus on pediatric SCD, TCD performance and neuro-epidemiology.Funding: 1R21HD089791 (PIs: Idro, Green)DisclosuresNo relevant conflicts of interest to declare.
Source: Blood - November 21, 2018 Category: Hematology Authors: Green, N. S., Munube, D., Bangirana, P., Opoka, R., Kayongo, E., Mupere, E., Buluma, L. R., Kebirungi, B., Sekibira, R., Kiguli, S., Kawooya, M., Lubowa, S. K., Elkind, M. S. V., Li, G., LaRussa, P., Idro, R. Tags: 114. Hemoglobinopathies, Excluding Thalassemia-Clinical: Poster II Source Type: research

Blood Cell Disorders and the Nervous System
This article discusses the epidemiology, diagnosis, treatment, and prevention of neurologic complications of common and rare blood cell disorders. recent findings A growing number of preventive treatment options are available for stroke in sickle cell disease. Paroxysmal nocturnal hemoglobinuria and immune thrombocytopenia can lead to stroke. Thrombotic thrombocytopenic purpura frequently causes neurologic symptoms and should be considered in the differential diagnosis of a patient with neurologic symptoms, thrombocytopenia, and hemolytic anemia. Polycythemia vera and essential thrombocythemia are rare causes of stroke....
Source: CONTINUUM: Lifelong Learning in Neurology - June 1, 2020 Category: Neurology Tags: REVIEW ARTICLES Source Type: research

4 questions parents have about moyamoya disease
Last month, families from across the country gathered at Boston Children’s Hospital to celebrate World Moyamoya Day. The expert speakers at the Moyamoya Family Day Symposium shared the latest information about this rare but very serious condition with parents and patients alike. Moyamoya disease occurs when the walls of the internal carotid arteries — the vessels that supply blood to important areas of the brain — become thickened and narrowed. As a result, blood flow to the brain slows, making blood clots more likely. Kids with moyamoya disease are at significantly higher risk of having a stroke, as well as other co...
Source: Thrive, Children's Hospital Boston - June 13, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Ask the Expert Diseases & Conditions Dr. Edward Smith moyamoya Moyamoya Disease Program Source Type: news

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

Haploidentical bone marrow transplant with post-transplant cyclophosphamide plus thiotepa improves donor engraftment in patients with sickle cell anemia: results of an international learning collaborative
Sickle cell disease (SCD) has evolved from a life-threatening condition in early childhood, to a chronic disease in adults [1,2]. Improved supportive care [3], use of hydroxyurea therapy [4], and regular blood transfusion therapy for primary [5] and secondary [6] stroke prevention, have resulted in improved childhood clinical outcomes and survival. Approximately 99% of all children born in high resource countries with SCD are expected to live to adulthood [7,8]. The most feared complication in children with SCD is stroke [9].
Source: Biology of Blood and Marrow Transplantation - November 27, 2018 Category: Hematology Authors: Josu de la Fuente, Nathalie Dhedin, Tatsuki Koyama, Francoise Bernaudin, Mathieu Kuentz, Leena Karnik, G érard Socié, Kathryn A. Culos, Robert A. Brodsky, Michael R. DeBaun, Adetola A. Kassim Source Type: research

Haploidentical Bone Marrow Transplantation with Post-Transplantation Cyclophosphamide Plus Thiotepa Improves Donor Engraftment in Patients with Sickle Cell Anemia: Results of an International Learning Collaborative
Sickle cell disease (SCD) has evolved from a life-threatening condition in early childhood to a chronic disease in adults [1,2]. Improved supportive care [3], use of hydroxyurea therapy [4], and regular blood transfusion therapy for primary [5] and secondary [6] stroke prevention have resulted in improved childhood clinical outcomes and survival. Approximately 99% of all children born with SCD are expected to live to adulthood [7,8]. The most feared complication in children with SCD is stroke [9].
Source: Biology of Blood and Marrow Transplantation - November 27, 2018 Category: Hematology Authors: Josu de la Fuente, Nathalie Dhedin, Tatsuki Koyama, Francoise Bernaudin, Mathieu Kuentz, Leena Karnik, G érard Socié, Kathryn A. Culos, Robert A. Brodsky, Michael R. DeBaun, Adetola A. Kassim Source Type: research

Cochrane ' s 30 under 30: Ndi Euphrasia Ebai-Atuh
Cochrane is made up of  13,000 members and over 50,000 supporters come from more than 130 countries, worldwide. Our volunteers and contributors are researchers, health professionals, patients, carers, people passionate about improving health outcomes for everyone, everywhere.Cochrane is an incredible community of people who all play their part in improving health and healthcare globally. We believe that by putting trusted evidence at the heart of health decisions we can achieve a world of improved health for all.  Many  of our contributors are young people working with Cochrane as researchers, citizen scientists...
Source: Cochrane News and Events - April 12, 2019 Category: Information Technology Authors: Lydia Parsonson Source Type: news

59. Alterations of the electroencephalographic rhythms in children with Sickle Cell disease (SCD): Source analysis with LORETA
Sickle Cell Disease (SCD) is a congenital familial pathology of the haemoglobin and it is classified as the most common genetic disease in the world.Neurological complications are very frequent: symptomatic stroke occurs in 11% of the SCD patients before they reach 20years of age, while 35% of the patients shows silent damages at the RMN with cognitive impairments and learning disabilities. The aim of this study is to verify the hypothesis that a different cerebral maturation between children with SCD and healthy controls exists. This has been achieved with the spectral analysis of electroencephalographic (EEG) rhythms and...
Source: Clinical Neurophysiology - October 21, 2013 Category: Neuroscience Authors: A. Bertoldo, P. Rampazzo, R. Manara, R. Colombatti, L. Sainati, M. Ermani Tags: Society Proceedings Source Type: research

The Great Pot Experiment
Barcott is a journalist who has contributed to the New York Times, National Geographic and other publications. Scherer is TIME’s Washington bureau chief. Portions of this article were adapted from Barcott’s new book “Weed the People, the Future of Legal Marijuana in America,” from TIME Books, is now available wherever books are sold, including Amazon.com, Barnes & Noble and Indiebound. Yasmin Hurd raises rats on the Upper East Side of Manhattan that will blow your mind. Though they look normal, their lives are anything but, and not just because of the pricey real estate they call home on the 10t...
Source: TIME.com: Top Science and Health Stories - May 14, 2015 Category: Consumer Health News Authors: Megan Gibson Tags: Uncategorized Drugs Source Type: news

Comprehensive neuropsychological evaluation of children and adolescents with sickle cell anemia: a hospital-based sample
Conclusion: As sickle cell anemia is considered a progressive cerebral vasculopathy, it is a potential risk factor for neurocognitive and psychosocial development. Therefore, periodic neuropsychological and behavioral evaluations of children and adolescents with sickle cell anemia may represent a useful measure to reduce long-term biopsychosocial repercussions.
Source: Revista Brasileira de Hematologia e Hemoterapia - April 3, 2017 Category: Hematology 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

Polyuria, Polydipsia and Possible Diabetes Insipidus?
Discussion The body is smart. It has mechanisms for maintaining balances within the body in a closely controlled manner but allows for a variety of states. This is very true for fluid balance in the body which is highly controlled between almost all of the major body organ systems. When fluid is low, the sensor sends signals for us to drink, and conserves fluid until we can. When the fluid is high, the kidneys excrete the excess and sends signals not to drink. Usually it works very well. While there are many pathological states that can cause polyuria and/or polydipsia, the most common reason is excessive fluid intake beca...
Source: PediatricEducation.org - March 7, 2022 Category: Pediatrics Authors: Pediatric Education Tags: Uncategorized Source Type: news

Predicting Pain in People With Sickle Cell Disease in the Day Hospital Using the Commercial Wearable Apple Watch: Feasibility Study
CONCLUSIONS: The strong performance of the model in all metrics validates feasibility and the ability to use data collected from a noninvasive device, the Apple Watch, to predict the pain scores during VOCs. It is a novel and feasible approach and presents a low-cost method that could benefit clinicians and individuals with sickle cell disease in the treatment of VOCs.PMID:36917171 | DOI:10.2196/45355
Source: Cell Research - March 14, 2023 Category: Cytology Authors: Rebecca Sofia Stojancic Arvind Subramaniam Caroline Vuong Kumar Utkarsh Nuran Golbasi Olivia Fernandez Nirmish Shah Source Type: research

What Are the Complications of Sickle Cell Trait?
Discussion Sickle cell disease (SCD) is a group of inherited blood disorders where there are abnormal hemoglobin molecules and the red blood cells take on a characteristic sickled shape instead of a rounded shape. Sickled hemoglobin provides an evolutionary advantage of giving the individual increased protection against severe and cerebral malaria. The sickled shape doesn’t move through the vascular system as well and therefore is more likely to aggregate in small vessels causing an increased risk of vaso-occlusive disease, acute chest syndrome, splenic sequestration, and priapism. There is also an increased risk of ...
Source: PediatricEducation.org - September 4, 2023 Category: Pediatrics Authors: Pediatric Education Tags: Uncategorized Source Type: news