Sleep and Phelan–McDermid Syndrome: Lessons from the International Registry and the scientific literature
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DOI: 10.1002/mgg3.2035
Abstract: Sleep is essential to maintaining a healthy life. Sleep disturbances among individuals with neurodevelopmental disorders are not well studied, affecting their early detection and treatment. Sleep disturbances in individuals with Phelan–McDermid Syndrome (PMS) are among… read more here.
Keywords: sleep phelan; phelan mcdermid; lessons international; mcdermid syndrome ... See more keywords
Hypothalamic Obesity: 4 Years of the International Registry of Hypothalamic Obesity Disorders
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DOI: 10.1002/oby.22315
Abstract: Hypothalamic obesity (HyOb) is a rare cause of rapid weight gain and early metabolic comorbidities. Effective treatment strategies are limited. The registry collected participant data and compared treatment approaches. read more here.
Keywords: international registry; years international; obesity years; hypothalamic obesity ... See more keywords
COVID‐19 pharmacotherapy utilization patterns during pregnancy: International Registry of Coronavirus Exposure in Pregnancy
Sign Up to like & getrecommendations! Published in 2022 at "Pharmacoepidemiology and Drug Safety"
DOI: 10.1002/pds.5440
Abstract: Women infected with SARS‐CoV‐2 during pregnancy are at increased risk of developing severe illness and experience a higher rate of preterm births than pregnant women who are not infected. The use of innovative or repurposed… read more here.
Keywords: registry coronavirus; covid; pregnancy; international registry ... See more keywords
International Registry of Coronavirus Exposure in Pregnancy (IRCEP) – Cohort Description and Methodological Considerations
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DOI: 10.1093/aje/kwac046
Abstract: Abstract Limited data are available about the potential health effects of infection with the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) on pregnant women and their developing offspring. We developed the International Registry of Coronavirus… read more here.
Keywords: registry coronavirus; exposure pregnancy; pregnancy; international registry ... See more keywords
2422Outcome of histologically-proven fulminant versus acute non-fulminant myocarditis with left ventricular systolic dysfunction. Evidence from the International Registry on Acute Myocarditis
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DOI: 10.1093/eurheartj/ehz748.0170
Abstract: Fulminant myocarditis (FM) is a form of acute myocarditis characterized by severe left ventricular (LV) dysfunction requiring inotropes and/or mechanical circulatory support. Based on a retrospective single-center study published in 2000, patients with FM were… read more here.
Keywords: international registry; acute; dysfunction; fulminant myocarditis ... See more keywords
Registries for study of nonmalignant hematological diseases: the example of the Severe Chronic Neutropenia International Registry.
Sign Up to like & getrecommendations! Published in 2019 at "Current Opinion in Hematology"
DOI: 10.1097/moh.0000000000000558
Abstract: PURPOSE OF REVIEW Registries provide 'real world' perspectives on the natural history and outcomes for many clinical conditions. The purpose of this review is to identify registries for nonmalignant hematological disease and to describe the… read more here.
Keywords: severe chronic; nonmalignant hematological; registry; international registry ... See more keywords
The spectrum of functional tic‐like behaviours: Data from an international registry
Sign Up to like & getrecommendations! Published in 2022 at "European Journal of Neurology"
DOI: 10.1111/ene.15611
Abstract: Between 2019 and 2022, there was a marked rise in adolescents/young adults seeking urgent help for functional tic‐like behaviours (FTLBs). Given the global scale of this phenomenon, we aimed to pool cases from different institutions… read more here.
Keywords: tic like; like behaviours; functional tic; international registry ... See more keywords
Insights From the International Registry of Acute Aortic Dissection: A 20-Year Experience of Collaborative Clinical Research
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DOI: 10.1161/circulationaha.117.031264
Abstract: Acute aortic dissection (AAD) is a life-threatening condition associated with high morbidity and mortality rates, and it remains a challenge to diagnose and treat. The International Registry of Acute Aortic Dissection was established in 1996… read more here.
Keywords: international registry; aortic dissection; registry acute; acute aortic ... See more keywords
Development and Implementation of the AIDA International Registry for Patients With Still's Disease
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DOI: 10.3389/fmed.2022.878797
Abstract: Objective Aim of this paper is to present the design, construction, and modalities of dissemination of the AutoInflammatory Disease Alliance (AIDA) International Registry for patients with systemic juvenile idiopathic arthritis (sJIA) and adult-onset Still's disease… read more here.
Keywords: still disease; patients still; registry; international registry ... See more keywords
Development and Implementation of the AIDA International Registry for Patients With Undifferentiated Systemic AutoInflammatory Diseases
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DOI: 10.3389/fmed.2022.908501
Abstract: Objective This paper points out the design, development and deployment of the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to pediatric and adult patients affected by Undifferentiated Systemic AutoInflammatory Diseases (USAIDs). Methods This is an… read more here.
Keywords: autoinflammatory; development; autoinflammatory diseases; aida international ... See more keywords
Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome
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DOI: 10.3389/fmed.2022.926500
Abstract: Objective The aim of this paper is to present the AutoInflammatory Disease Alliance (AIDA) international Registry dedicated to Vacuoles, E1 enzyme, X-linked, Autoinflammatory, Somatic (VEXAS) syndrome, describing its design, construction, and modalities of dissemination. Methods… read more here.
Keywords: patients vexas; aida international; registry; international registry ... See more keywords