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List of works by Rachel Knowles

"I was so worried about every drop of milk" - feeding problems at home are a significant concern for parents after major heart surgery in infancy

scientific article

Challenges for funders in monitoring compliance with policies on clinical trials registration and reporting: analysis of funding and registry data in the UK

scientific article published on 17 February 2020

Combining qualitative and quantitative operational research methods to inform quality improvement in pathways that span multiple settings

scientific article published on 6 January 2017

Comparing the clinical and economic effects of clinical examination, pulse oximetry, and echocardiography in newborn screening for congenital heart defects: a probabilistic cost-effectiveness model and value of information analysis

scientific article published on January 2007

Death and Emergency Readmission of Infants Discharged After Interventions for Congenital Heart Disease: A National Study of 7643 Infants to Inform Service Improvement ⬇️

scientific article published on 20 May 2016

Ethics, governance and consent in the UK: implications for research into the longer-term outcomes of congenital heart defects.

scientific article

Ethnic and socioeconomic variation in incidence of congenital heart defects ⬇️

scientific article

Ethnic-specific mortality of infants undergoing congenital heart surgery in England and Wales

scientific article published on 01 March 2019

Functional health status of adults with tetralogy of Fallot: matched comparison with healthy siblings.

scientific article published on 17 March 2012

Going home after infant cardiac surgery: a UK qualitative study

scientific article published on 29 January 2016

Identifying improvements to complex pathways: evidence synthesis and stakeholder engagement in infant congenital heart disease

scientific article published on 06 June 2016

Incidence and clinical features of congenital adrenal hyperplasia in Great Britain

scientific article published on 01 February 2012

Issues facing families of infants discharged after cardiac surgery: the perceptions of charity helpline staff

scientific article published on 30 March 2018

Late clinical presentation of congenital adrenal hyperplasia in older children: findings from national paediatric surveillance

scientific article published on 16 September 2013

Life Study: a UK-wide birth cohort study of environment, development, health, and wellbeing

scientific article published in The Lancet

Modelling survival and mortality risk to 15 years of age for a national cohort of children with serious congenital heart defects diagnosed in infancy.

scientific article

Mortality with congenital heart defects in England and Wales, 1959-2009: exploring technological change through period and birth cohort analysis.

scientific article published on 29 June 2012

Newborn screening for congenital heart defects: a systematic review and cost-effectiveness analysis.

scientific article

Parents' Experiences of Caring for Their Child at the Time of Discharge After Cardiac Surgery and During the Postdischarge Period: Qualitative Study Using an Online Forum.

scientific article

Parents� Experiences of Caring for Their Child at the Time of Discharge After Cardiac Surgery and During the Postdischarge Period: Qualitative Study Using an Online Forum (Preprint)

Patient-reported outcome measures (PROMs) in paediatric ophthalmology: a systematic review

scientific article published on 06 June 2013

Patient-reported quality of life outcomes for children with serious congenital heart defects.

scientific article published on 09 January 2014

Prevalence of permanent childhood hearing loss detected at the universal newborn hearing screen: Systematic review and meta-analysis

scientific article published on 11 July 2019

Quality of life and congenital heart defects: comparing parent and professional values

scientific article

Risk factors for permanent childhood hearing impairment

scientific article published on 28 November 2018

Self-Reported Health Experiences of Children Living with Congenital Heart Defects: Including Patient-Reported Outcomes in a National Cohort Study

scientific article

Sharing and reuse of individual participant data from clinical trials: principles and recommendations.

scientific article published on 14 December 2017

Signs of deterioration in infants discharged home following congenital heart surgery in the first year of life: a qualitative study

scientific article published on 28 January 2016

Surveillance of rare diseases: a public health evaluation of the British Paediatric Surveillance Unit

scientific article published on 18 August 2011

The impact and efficacy of routine pulse oximetry screening for CHD in a local hospital

scientific article published on 24 February 2016

The implementation of a new parallel child health record

article

Twenty years of active paediatric surveillance in the the UK and Republic of Ireland

scientific article published on 20 July 2006

Unexpected deaths and unplanned re-admissions in infants discharged home after cardiac surgery: a systematic review of potential risk factors

scientific article published on 30 December 2014

Using multiple sources to improve and measure case ascertainment in surveillance studies: 20 years of the British Paediatric Surveillance Unit

scientific article

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