Abstract:
:Large volumes of data and multiple computing platforms are now universal components of paediatric cardiovascular medicine, but are in a constant state of evolution. Often, multiple sets of related data reside in disconnected "silos", resulting in clinical, administrative, and research activities that may be duplicative, inefficient, and at times inaccurate. Comprehensive and integrated data solutions are needed to facilitate these activities across congenital heart centres. We describe methodology, key considerations, successful use cases, and lessons learnt in developing an integrated data platform across our congenital heart centre.
journal_name
Cardiol Youngjournal_title
Cardiology in the youngauthors
Bradley DJ,Wu DTY,Goldberg CS,Serwer GS,Lowery RE,Donohue JE,Hirsch-Romano JC,Zheng K,Pasquali SKdoi
10.1017/S1047951116001268subject
Has Abstractpub_date
2017-05-01 00:00:00pages
757-763issue
4eissn
1047-9511issn
1467-1107pii
S1047951116001268journal_volume
27pub_type
杂志文章,评审abstract:BACKGROUND:Risk for neurodevelopmental delay in infants and children with CHD is well established, but longer-term outcomes are equivocal. A meta-analysis was conducted to establish whether cognitive deficits remain beyond childhood - into teenage and young adult years. Methods and results A total of 18 unique samples,...
journal_title:Cardiology in the young
pub_type: 杂志文章,meta分析
doi:10.1017/S104795111700230X
更新日期:2018-03-01 00:00:00
abstract::Plastic bronchitis is a severe complication after a Fontan procedure, with an estimated incidence around 1-2% and poor prognosis. We present the cases of four patients with plastic bronchitis after a total cavopulmonary connection with a stenosis of the left pulmonary artery that was stented successfully. In three of ...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951113002163
更新日期:2015-01-01 00:00:00
abstract:BACKGROUND:CHD is the leading cause of mortality due to birth defects. Array comparative genomic hybridisation (aCGH) detects submicroscopic copy number changes and may improve identification of the genetic basis of CHD. METHODS:This is a retrospective analysis of 1252 patients from a regional referral centre who had ...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951114001838
更新日期:2015-08-01 00:00:00
abstract::Single-nucleotide polymorphisms in miRNA-machinery genes may alter the biogenesis of miRNAs affecting disease susceptibility. In this case-control study, we aimed to evaluate the impact of three single-nucleotide polymorphisms (DICER rs1057035, DROSHA rs10719, and XPO5 rs11077) and their combined effect in a genetic r...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951120004874
更新日期:2021-01-11 00:00:00
abstract::Although extrarenal manifestations of haemolytic-uraemic syndrome are not frequent, myocardial dysfunction should be given special consideration because of the importance of proper early haemodynamic management and potential complications. We report the case of a 21-month-old child with haemolytic-uraemic syndrome who...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951115002759
更新日期:2016-06-01 00:00:00
abstract::Cardiac involvement is a rare complication of infection by the influenza B virus. It usually presents with ventricular dysfunction, arrhythmias, or both. We report a 13-year-old boy with clinical, electrocardiographic, and laboratory findings of myocardial ischaemia during an otherwise silent acute infection with infl...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951105000454
更新日期:2005-04-01 00:00:00
abstract:OBJECTIVE:We sought to use techniques of decision analysis to compare values or preferences for balloon angioplasty versus surgery for treatment of aortic coarctation in children. BACKGROUND:Balloon angioplasty and surgery for aortic coarctation have a differing spectrum and prevalence of outcomes and complications, m...
journal_title:Cardiology in the young
pub_type: 杂志文章,meta分析,评审
doi:10.1017/S1047951107001795
更新日期:2008-02-01 00:00:00
abstract::Decades ago, mass-scale epidemiologic studies were undertaken to accurately describe the prevalence of congenital heart disease and associated malformations, and to identify inheritance patterns, teratogenic influence and aetiologic underpinnings. Despite phenomenal breakthroughs in molecular diagnosis of congenital h...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951113001698
更新日期:2013-12-01 00:00:00
abstract::CHD is associated with poor growth, delayed motor and language skills development, and increased length of hospital stay; 28.2% of infants were stunted, with z-scores<-2. The severity of surgery score was not associated with an increased length of stay, suggesting that a low weight-for-age z-score at the time of surge...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951115001778
更新日期:2016-04-01 00:00:00
abstract::Supravalvular aortic stenosis is associated with the Williams-Beuren syndrome, but it also occurs in a non-syndromatic congenital form. An elastin gene mutation of chromosome 7q11.23 is responsible in both cases. The vascular features are identical. These patients have a higher risk of sudden death, particularly when ...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951110001563
更新日期:2011-02-01 00:00:00
abstract:OBJECTIVE:Placement of peritoneal drainage catheters intra-operatively has been shown to help prevent fluid overload in children recovering from surgery for two-ventricle heart disease. We aimed to determine whether this practice is also helpful in children recovering from Fontan palliation. MATERIAL AND METHODS:A ret...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951113000693
更新日期:2014-06-01 00:00:00
abstract:BACKGROUND:To the best of our knowledge, normal limits of heart rate with respect to gender, and as established using 24-hour ambulatory Holter electrocardiography, have yet to be published for the entire age range of children and adolescents. OBJECTIVES:To establish the normal limits for heart rate in newborns, infan...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951108002539
更新日期:2008-10-01 00:00:00
abstract::Critical heart disease in the pediatric population is associated with high morbidity and mortality. Research around the most effective communication and decision-making strategies is lacking. This systematic review aims to summarise what is known about parent preference for communication and decision-making in childre...
journal_title:Cardiology in the young
pub_type: 杂志文章,meta分析,评审
doi:10.1017/S1047951118001233
更新日期:2018-10-01 00:00:00
abstract:BACKGROUND:Identification of patients with latent rheumatic heart disease by echocardiography presents a unique opportunity to prevent disease progression. Myocardial strain is a more sensitive indicator of cardiac performance than traditional measures of systolic function. OBJECTIVE:The objective of this study was to...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951116002778
更新日期:2017-08-01 00:00:00
abstract::Adult survivors of aortic interruption is extremely rare. Diagnosis mostly depends on additional imaging with CT and MRI. We present a rare case of acquired complete interruption of the aorta that was found incidentally at the time of coronary angiography. This finding was confirmed by CT scan. ...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951114001693
更新日期:2015-03-01 00:00:00
abstract:BACKGROUND AND OBJECTIVES:Flow profiles are important determinants of fluid-vessel wall interactions. The aim of this study was to assess blood flow profiles in the aorta and pulmonary trunk in patients with transposition and different ventriculoarterial connection, and hence different mechanics of the coherent pump. ...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951112002193
更新日期:2014-02-01 00:00:00
abstract::We evaluated the efficiency of non-invasive magnetic resonance coronary angiography in detecting coronary arterial lesions in 106 patients, aged from 4 months to 37 years, with a median of 13 years, with Kawasaki disease. Non-contrast enhanced, free-breathing magnetic resonance coronary angiographic studies using both...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951106001168
更新日期:2006-12-01 00:00:00
abstract:BACKGROUND:Challenges remain in the judgement of pathological murmurs in newborns at maternity hospitals, and there are still many simple major CHD patients in developing countries who are not diagnosed in a timely fashion. This study aimed to evaluate the accuracy of cardiac auscultation on neonatal CHD by general pae...
journal_title:Cardiology in the young
pub_type: 杂志文章,多中心研究
doi:10.1017/S1047951119000799
更新日期:2019-05-01 00:00:00
abstract:BACKGROUND:Complications at the vascular access sites are among the most common adverse events in congenital cardiac catheterization. The use of small-gauge catheters may reduce these events; however, other factors can contribute to the development of vascular complications. OBJECTIVES:To determine factors associated ...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951111000989
更新日期:2012-04-01 00:00:00
abstract::VACTERL association and Scimitar syndrome are rare congenital diseases. In this study, we report on a neonate with prenatal suspicion of VACTERL association and small left-sided cardiac structures, which, only on postnatal angiography, could be revealed to be part of a Scimitar syndrome. As this is the second reported...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951114000924
更新日期:2015-03-01 00:00:00
abstract:AIMS:To assess results of closure of atrial septal defects within the oval fossa by devices delivered by catheterisation in symptomatic infants and children under 2 years of age. METHODS AND RESULTS:The Amplatzer septal occluder was used. Results, and complications of transcatheter device treatment in patients aged be...
journal_title:Cardiology in the young
pub_type: 临床试验,杂志文章
doi:10.1017/s1047951100008234
更新日期:2000-09-01 00:00:00
abstract::We found spontaneous echoes in two teenagers with nephrotic syndrome and profound hypoalbuminemia, both having normal cardiac structure, function and output. The phenomenon disappeared after the level of albumin normalized. In one patient, all spontaneous echoes disappeared following convalescence, the level of albumi...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951104005153
更新日期:2004-10-01 00:00:00
abstract:BACKGROUND:Temporary percutaneous epicardial pacing wires are routinely placed in children following cardiac surgery. There is uncertainty in clinical practice about the optimum timing for their removal, and practice varies widely both within and between different institutions. AIM:The aim of our study was to describe...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951107001035
更新日期:2007-10-01 00:00:00
abstract::Persistent fifth - double-lumen - aortic arch is a rarely seen entity, which is usually associated with other cardiac anomalies; it has been previously reported only in children. We report a new case of double-lumen aortic arch with a systemic-to-systemic connection diagnosed incidentally during cardiac multi-detector...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951111001855
更新日期:2012-06-01 00:00:00
abstract::A bicuspid aortic valve is not only a common congenital heart defect but also an enigmatic condition that can cause a large spectrum of diseases, such as aortic valve stenosis and severe heart failure in newborns whereas aortic dissection in adults. On the contrary, a bicuspid aortic valve can also occur with normal f...
journal_title:Cardiology in the young
pub_type: 杂志文章,评审
doi:10.1017/S1047951118001658
更新日期:2019-01-01 00:00:00
abstract::Behçet's disease is a chronic autoimmune disease with vascular complications that are most frequently manifested as thromboembolism in veins and pseudoaneurysm in arteries. We report the case of a 13-year-old boy admitted for clinical and biological signs of rheumatic fever associated with chest pain. The clinical exa...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951113000498
更新日期:2014-04-01 00:00:00
abstract::Tracheobronchial compression of cardiovascular origin is an uncommon and frequently unrecognised cause of respiratory distress in children. The compression may be due to encircling vessels or dilated neighbouring cardiovascular structures. Bronchoscopy and detailed radiography, especially computed tomography and magne...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951112000765
更新日期:2013-04-01 00:00:00
abstract::A 31-year-old patient previously underwent a Mustard operation presented with palpitations. Atrial tachycardia and paroxysmal atrial fibrillation were documented on the surface electrocardiogram. Under the guidance of a three-dimensional electroanatomic mapping system, ablation of the isolated left-sided pulmonary vei...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951114001851
更新日期:2015-08-01 00:00:00
abstract:BACKGROUND:Disagreement currently exists regarding the definition of aortic dextroposition. It is suggested that the term be used interchangeably with aortic overriding, along with suggestions that the aortic valve overrides in the normal heart. The dextroposed aorta, however, does not always override the crest of the ...
journal_title:Cardiology in the young
pub_type: 杂志文章,评审
doi:10.1017/S1047951114001139
更新日期:2015-04-01 00:00:00
abstract::A newborn presented with an aorto-right ventricular tunnel, a defect connecting the left aortic sinus to the right ventricle. The patient underwent repair on 4th day of life. ...
journal_title:Cardiology in the young
pub_type: 杂志文章
doi:10.1017/S1047951115001572
更新日期:2016-01-01 00:00:00