Actively Recruiting
Inherited Cardiac cONditions In Kids
Led by Imperial College London · Updated on 2025-03-05
300
Participants Needed
3
Research Sites
221 weeks
Total Duration
On this page
Sponsors
I
Imperial College London
Lead Sponsor
R
Royal Brompton & Harefield NHS Foundation Trust
Collaborating Sponsor
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
Inherited Cardiac cONditions In Kids
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Males or females with a confirmed diagnosis of childhood onset (<16 years) cardiomyopathy
- Males or females with childhood onset (<16 years) of a rare inherited cardiac condition likely to be monogenic
- Parents capable of providing informed consent
- Genotype negative after local standard diagnostic inherited cardiac condition gene panel
- Family members of patients with inherited cardiac conditions, both affected and unaffected
You will not qualify if you...
- Parents lacking capacity to provide consent for themselves or their children
- Disease onset over 16 years of age
- Significant teratogen exposure, including maternal diabetes, likely contributing to heart dysfunction
- Significant coronary heart disease likely contributing to heart dysfunction
- Other secondary causes likely explaining the patient's cardiac dysfunction
- Patients with a confirmed genetic diagnosis (variants of uncertain significance are allowed)
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 3 locations
1
Royal Brompton Hospital
London, United Kingdom, SW3 6NP
Actively Recruiting
2
Great Ormond Street Hospital for Children
London, United Kingdom
Actively Recruiting
3
Harefield Hospital
Uxbridge, United Kingdom, UB9 6JH
Actively Recruiting
Research Team
K
Katherine Josephs
CONTACT
C
Chief Investigator
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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