• Research type

    Research Study

  • Full title

    ICONIK: Inherited Cardiac cONditions In Kids Understanding the Genetics and Outcomes of Paediatric Inherited Cardiac Conditions



  • Contact name

    James Ware

  • Contact email


  • Sponsor organisation

    Imperial College, London

  • ISRCTN Number


  • Duration of Study in the UK

    5 years, 0 months, 1 days

  • Research summary

    The main aim of this study is to improve the understanding of the genetic cause of childhood inherited cardiac conditions (ICC). ICC is an umbrella term which includes cardiomyopathies, arrhythmia syndromes and aortopathies.

    The initial focus of the study will be on cardiomyopathies, which are diseases of the heart muscle. These conditions can mean the heart cannot pump blood around the body as effectively. We plan to recruit children affected by all types of cardiomyopathy, and their families.

    We will also recruit subsets of patients affected by other inherited cardiac conditions.

    Children, their parents, and in some cases other family members will be invited to participate from centres in London via clinical teams who have expertise in this area. Application will be made to the NIHR CRN Portfolio to enable wider recruitment.

    Participants will give blood samples for a genetic test called whole exome sequencing (WES) or whole genome sequencing (WGS) to look for genetic changes. In some cases, participants may have had whole genome sequencing as part of their clinical care. We will seek consent to release this data to the research team and export it from Genomics England. We will also review the results of investigations carried out as part of the patient’s routine clinical care, such as MRI scans of the heart or echocardiograms.

    We aim to identify new genes and genetic variants that cause inherited cardiac disease in children. The information we collect may help to improve the diagnosis and treatment for patients with these diseases in the future.

  • REC name

    North of Scotland Research Ethics Committee 2

  • REC reference


  • Date of REC Opinion

    20 May 2022

  • REC opinion

    Further Information Favourable Opinion

Shape the future of the HRA website.