A5091044385- Congenital Heart Disease Studies
- Child and Adolescent Health
- Congenital Diaphragmatic Hernia Studies
- Metabolism and Genetic Disorders
- Infant Development and Preterm Care
- Sexual Differentiation and Disorders
- Family and Patient Care in Intensive Care Units
- Hearing, Cochlea, Tinnitus, Genetics
- Ethics and Legal Issues in Pediatric Healthcare
- Ethics in Clinical Research
- Tracheal and airway disorders
- Birth, Development, and Health
- Cleft Lip and Palate Research
- Health disparities and outcomes
- Craniofacial Disorders and Treatments
- Heart Failure Treatment and Management
- Health, Environment, Cognitive Aging
- Healthcare Policy and Management
- Thyroid Disorders and Treatments
- Adolescent and Pediatric Healthcare
- Hearing Loss and Rehabilitation
- Childhood Cancer Survivors' Quality of Life
- Congenital Anomalies and Fetal Surgery
- Folate and B Vitamins Research
- Neonatal Respiratory Health Research
Medical Research Council
2013-2025
Ormond (United States)
2025
Great Ormond Street Hospital
2017-2024
University College London
2015-2024
University of Western States
2024
University of British Columbia
2024
Children's Health Ireland at Crumlin
2024
National Institute for Health Research
2020-2023
UK Research and Innovation
2023
Goshen College
2021
Objectives We examined major issues associated with sharing of individual clinical trial data and developed a consensus document on providing access to participant from trials, using broad interdisciplinary approach. Design methods This was consensus-building process among the members multistakeholder task force, involving wide range experts (researchers, patient representatives, methodologists, information technology experts, representatives funders, infrastructures standards development...
Introduction Ethnic differences in the birth prevalence of congenital heart defects (CHDs) have been reported; however, studies contemporary UK population are lacking. We investigated ethnic variations incidence serious CHDs requiring cardiac intervention before 1 year age. Methods All infants who had a England and Wales between January 2005 31 December 2010 were identified national disease surgical audit matched with paediatric intensive care admission records to create linked individual...
Objective To compare patient-reported, health-related quality of life (QoL) for children with serious congenital heart defects (CHDs) and unaffected classmates to investigate the demographic clinical factors influencing QoL. Design Retrospective cohort study. Setting UK National Health Service. Patients UK-wide CHDs aged 10–14 years requiring cardiac intervention in first year one 17 paediatric surgical centres operating during 1992–1995. A comparison group similar age sex was recruited....
Background Technological advances in surgery, intensive care and medical support have led to substantial decrease mortality for children with congenital heart defects (CHDs) over the last 50 years. Methods Using routinely-collected population data England Wales from 1959 2009, authors investigated age, period birth cohort trends child attributable CHDs. Results The total number of deaths CHDs at all ages between 2009 was 61 903 (33 929 (55%) males). Absolute numbers CHD-related (under age 15...
<h3>Objectives</h3> To estimate the incidence of clinically diagnosed congenital adrenal hyperplasia (CAH), clinical features and age at first presentation. assess potential benefit newborn screening for CAH. <h3>Design</h3> Active surveillance through British Paediatric Surveillance Unit all children aged under 16 years with newly CAH, undertaken prospectively between August 2007 2009. Twelve laboratories testing CAH reported new diagnoses January Reporting clinicians completed...
Background Improvements in hospital‐based care have reduced early mortality congenital heart disease. Later adverse outcomes may be reducible by focusing on at or after discharge. We aimed to identify risk factors for such events within 1 year of discharge intervention infancy and, separately, subgroups that might benefit from different forms intervention. Methods and Results Cardiac procedures performed infants between 2005 2010 England Wales the UK National Congenital Heart Disease Audit...
Considering diversity when designing and conducting research is fundamental to the responsible conduct of ensures that outputs from scientific are reproducible, minimize bias enable everyone within society opportunity benefit. Therefore, health biomedical should include consideration inclusion in way studies designed conducted. An evaluation researchers' approaches was undertaken generate evidence inform policy development by UK Medical Research Council (MRC). Seven hundred seventy-two...
Objectives: Congenital heart defects (CHD) are an important cause of death and morbidity in early childhood, but the effectiveness alternative newborn screening strategies preventing collapse or death—before diagnosis—of infants with treatable life-threatening is uncertain. We assessed their efficiency to inform policy research priorities. Methods: compared clinical examination alone either pulse oximetry echocardiography making a timely diagnosis CHD diagnosing clinically significant CHD....
Abstract Increasing numbers of operations in small infants with complex congenital heart disease are being carried out the UK year on year, more surviving initial operation. However, even after successful surgery some these remain fragile when they discharged home. The aim study was to elicit parents' experiences caring for a child needs major surgery. We conducted qualitative involving semi‐structured interviews parents 20 children (aged <1–5 months at hospital discharge), who had...
Congenital heart disease (CHD) is the most common class of birth defects, which encompasses a broad spectrum severity ranging from relatively minor to extremely complex. Improvements in surgery and intensive care have resulted an increasing number infants with complex lesions surviving after until time discharge hospital, but there remain concerns about out-of-hospital mortality, variability how services are provided at beyond, difficulties experienced by some families accessing care.As part...
Objective To qualitatively assess the discharge processes and postdischarge care in community for infants discharged after congenital heart interventions first year of life. Design Qualitative study using semistructured interviews Framework Analysis. Setting UK specialist cardiac centres services their patients are to. Subjects Twenty-five cardiologists nurses from tertiary centres, 11 primary secondary health professionals 20 parents children who had either died or needed emergency...
Congenital heart defects (CHDs) are a significant cause of death in infancy. Although contemporary management ensures that 80% affected children reach adulthood, post-infant mortality and factors associated with during childhood not well-characterised. Using data from UK-wide multicentre birth cohort serious CHDs, we observed survival investigated independent predictors up to age 15 years.Data were extracted retrospectively hospital records certificates 3,897 (57% boys) prospectively...
Aims To describe the ways in which parents recognise and make decisions about their child's symptoms following discharge home after congenital heart interventions first year of life experiences seeking help. Methods This was a qualitative study involving semistructured interviews with parents. Twenty-one were recruited to study. Parents all had child who surgery between September 2009 October 2013 at one three UK cardiac centres; children either died or readmitted as an emergency initial...
Background Improving integration and continuity of care across sectors within resource constraints is a priority in many health systems. Qualitative operational research methods problem structuring have been used to address quality improvement services involving multiple but not combination with quantitative that enable targeting interventions according patient risk. We aimed combine these augment inform an initiative concerning infants congenital heart disease (CHD) whose complex pathway...
Active surveillance of primary congenital hypothyroidism (CH) in a multiethnic population with established newborn bloodspot screening. To estimate performance screening for CH at different test thresholds and calculate incidence CH. Prospective from June 2011 to 2012 3-year follow-up outcomes. Relative likelihood ratios (rLRs) estimated compare TSH 6 mU/L 8 mU/L, the nationally recommended standard 10 presumptive positive result. UK National Health Service. Clinician notification children...
It has been demonstrated that bacteria can produce the very potent carcinogens (N-nitroso compounds), from nitrite and suitable amines. hypothesized this happen whenever a body site which is normally sterile becomes colonized by bacteria. If so then such chronic infections should result in an increased incidence of local cancers also at some distant sites. To test we studied risk cancer various sites cohort carriers Salmonella typhi/paratyphi. We have observed greatly biliary tract...
Birth prevalence of Robin sequence (RS) is commonly reported as 1 case per 8000-14 000 live births. These estimates are based on single-source ascertainment and may miss infants who did not require hospital admission or those without overt upper airway obstruction at birth.To identify the true birth RS with cleft palate in UK Ireland from a population-based cohort high ascertainment.Active surveillance was carried out UK/Ireland using dual sources ascertainment: British Paediatric...
Patients (1,643) undergoing vagotomy for peptic ulcer at York District Hospital were traced through the Office of Populations Censuses and Surveys (OPCS) cause mortality obtained 577 who had died. Expected cohort was calculated using a years risk calculation in 5 year bands. There an excess from cancer all sites (1.5-fold), stomach (1.6-fold), colorectum (1.7-fold), biliary tract (4.1-fold) lung (1.6-fold). no or oesophagus, pancreas female breast. The numbers deaths have been too few length...