Research Programmes

The Children’s Heart Federation supports several research studies to improve the understanding, diagnosis and treatment of congenital or aquired heart disease in children.
01 Dec 2016

04/11/16 - CQC’s Invisible Conditions Campaign Spotlight on Heart Conditions

CHF are grateful that the Care Quality Commissions (CQC) has approached us so that we can inform all our member groups, parents and families of a forthcoming social media campaign. From 14 November to 18 November 2016 a multi-channel public engagement campaign will take place on social media called: Invisible Conditions.   The purpose of the […]

04/11/16 - Parents’ views on developing an app to manage children’s pain

CHF would greatly value CHF parents’ views following a request from a research team who are addressing a project to develop the content and functionality of an app to inform, engage and support parents in managing their child’s pain whilst in hospital. We are circulating a survey at the moment to ask parents what they […]

03 Jan 2017

04/11/16 - CHF, CHD & collaborative research

CHF are looking forward to future collaborative work addressing congenital heart disease (CHD) support for children and families.  And we especially look forward to supporting potential research being addressed by Prof Priscilla Alderson and Dr Katy Sutcliffe from University College London and would like to invite our healthcare and Heart2Heart colleagues to similarly support the […]

01 Dec 2016

04/11/16 - CHD research & families

As the academic year gathers momentum, CHF has been approached by a research scientist from Yale University, School of Medicine who is also working collaboratively with Kings College London (KCL).  Dr John N. Griffin, Senior Research Associate, Department of Pediatrics is part of a team investigating the genetic causes of congenital heart disease and would […]

Mar 20th 2015 - Emotional Coping Strategies – University of Essex

Click here for a PDF version of this information   Link to Questionnaire   The following is information is provided by Emily Tan, the lead on the University of Essex’s study to better understand how parents of children with congenital heart conditions make sense of difficult and distressing experiences during their child’s treatment.   What […]

23/04/15 - The LENA Study

LENA stands for Labeling of Enalapril from Neonates up to Adolescents. This study marks a first step in developing medicines in the form of mini-tablets for children, which will ultimately help tailor drug treatment to the specific needs of young patients. CHF have joined a five-year study funded by the EU Commission to develop a […]

Mar 13rd 2015 - PRAiS2 Study

The PRAiS2 (Partial Risk Adjustment in Surgery) study is developing a software that monitors the outcomes after paediatric heart surgery. In particular, this study’s goal is to improve the already existing PRAiS risk model for 30-day mortality following paediatric cardiac surgery by incorporating more detailed information about the presence of additional medical conditions. Another aim of […]

Mar 13rd 2015 - Morbidity Study

The aim of this study is to better understand how heart surgery affects children and their families in the long-term. We know that unfortunately some children who undergo heart surgery develop complications (morbidities) during or after the operation: some of these are relatively minor, but others can be much more serious. Within this study, we would […]

Feb 06th 2013 - Infant Heart Study

The Infant Heart Study is a national study looking at follow up care for babies with congenital heart disease in the UK. The aim of the study is to improve the information and support available to families when they take their baby home from hospital after surgery. We are really keen to hear your views […]

Jun 18th 2012 - Patient Care Study

CHF supports a research study at Great Ormond Street Hospital which is working on improving the care patients and families receive following heart surgery. In particular,  the research of  Dr. Jo Wray, who is looking at the factors associated with parent’s stress and coping mechanisms when children are hospitalized. Other aspects of this project involve looking into the impact of […]

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