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.

Apr 23rd 2020 - What are your views on using patients’ health data to try to improve services?

The Children’s Heart Federation is involved in a new research project called CHAMPION to try to improve how the quality of services for congenital heart disease (CHD) is measured and reported in England. Many research projects collect new data and, as part of that, patients are explicitly asked to consent to that new data being […]

Apr 15th 2020 - What are your views on using patients’ health data to try to improve services?

The Children’s Heart is involved in a new research project called CHAMPION to try to improve how the quality of services for congenital heart disease (CHD) is measured and reported in England. Many research projects collect new data and, as part of that, patients are explicitly asked to consent to that new data being used […]

Apr 14th 2020 - Take part in the SHARE study – what is your experience of COVID-19 coronavirus?

The University of Southampton and the University of York are researching how children and young people with congenital heart disease and their parents are finding life during the COVID-19 coronavirus outbreak. The SHARE study: how are you coping. Parent survey Child Survey For more information, contact: SHARE.study@soton.ac.uk

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 […]

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