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.

Mar 12nd 2020 - Research study – looking for parents of children with CHD and or Down syndrome

Dr Marcia Van Riper, Professor at the University of North Carolina is conducting a study  to examine how social determinants of health (e.g. economic stability, education, health and health care, and where you live) influence child and caregiver health-related quality of life and family adaptation in three groups of families: 1) families of children with […]

Oct 25th 2018 - Selection, definition and evaluation of important early morbidities associated with paediatric cardiac surgery

CHF has been involved with this research project being carried out at Great Ormond Street Hospital. Read more about it here.

Aug 16th 2017 - CHF supports research into an intervention to reduce distress after a stay in intensive care

This is a survey looking for feedback from parents with children who have been in paediatric intensive care (PIC). The study at King’s College London is exploring a new intervention that might reduce distress following a stay in paediatric intensive care. We would welcome any parents of children who have been in paediatric intensive care […]

Nov 07th 2016 - 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 […]

Nov 04th 2016 - CQC’s Invisible Conditions Campaign Spotlight on Heart Conditions

CHF are grateful that the Care Quality Commissions (CQC) approached us so that we could inform all our partner groups, parents and families of the social media campaign that took place from 14 November to 18 November 2016.  This was a multi-channel public engagement campaign that took place on social media called: Invisible Conditions.   The purpose […]

Nov 04th 2016 - 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 […]

Nov 04th 2016 - 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 […]

Apr 23rd 2015 - 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 […]

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