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Inherited Cardiac cONditions In Kids
Sponsor: Imperial College London
Summary
All patients with heart disease should have the opportunity to participate in research into their condition, to advance knowledge and treatment. The investigators have built an online registry and database - The Heart Hive - to connect research-willing participants (with heart muscle disease) with active researchers and projects. Participants enrol and upload their own data through the website.This study uses The Heart Hive platform to study cardiomyopathies - heart muscle disease. These are progressive diseases, and there is a need to better understand what factors affect the chances of developing cardiomyopathy, and how the condition progresses. The study will collect information about participants diagnosis, DNA for genetic analysis, and then follow participants' clinical progress. The study will identify genetic variants that cause cardiomyopathy, and determine which specific genetic or environmental factors predict disease severity, progression and response to treatment, with an overall objective of identifying new and personalised treatments for patients with this disease.
Official title: Inherited Cardiac cONditions In Kids: Understanding the Genetics and Outcomes of Paediatric Inherited CardiacConditions
Key Details
Gender
All
Age Range
Any - Any
Study Type
OBSERVATIONAL
Enrollment
300
Start Date
2022-09-01
Completion Date
2026-12-01
Last Updated
2025-03-05
Healthy Volunteers
No
Interventions
Patients with inherited cardiac condition, onset <16 years old and Parents
Patients with a confirmed diagnosis of an inherited cardiac condition, onset \<16 years old and Parents will have samples that undergo whole genome sequencing and biomarker analysis
Locations (3)
Royal Brompton Hospital
London, United Kingdom
Great Ormond Street Hospital for Children
London, United Kingdom
Harefield Hospital
Uxbridge, United Kingdom