Actively Recruiting
Inherited Cardiac cONditions In Kids: Understanding the Genetics and Outcomes of Paediatric Inherited Cardiac Conditions
Led by Imperial College London · Updated on 2025-03-05
300
Participants Needed
3
Research Sites
N/A
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
Researchers are conducting a multi-centre observational study focused on children with rare inherited cardiac conditions, particularly those diagnosed with cardiomyopathy before age 16. The study aims to better understand the genetic and environmental factors influencing these heart muscle diseases, including disease progression and response to treatments. By collecting genetic information and clinical data, the study seeks to identify new personalized treatment options for affected children. Participants include children with diagnosed inherited cardiac conditions and their parents. The study collects baseline demographic, imaging, and genotyping data primarily from routine clinical care, including whole genome sequencing. Some participants may provide blood or saliva samples for genetic and biomarker analysis. Family members of deceased patients might also donate stored tissue or samples if available. The study plans to follow participants over a 5-year period. During the study, researchers will access clinical data including health information and results from routine tests like echocardiograms. Some procedures may involve minimal risk, such as blood or saliva collection. The study focuses on monitoring the participants' health outcomes and genetic markers to understand disease progression. The total follow-up duration for each participant is up to five years, with data collected throughout this period.
CONDITIONS
Brief Title
Inherited Cardiac cONditions In Kids
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Children under 16 years with a confirmed diagnosis of childhood onset cardiomyopathy
- Children under 16 years with a rare inherited cardiac condition likely caused by a single gene
- Parents able to provide informed consent
- Children who tested negative on local inherited cardiac condition gene panels
- Family members of affected patients, both with and without symptoms
You will not qualify if you...
- Parents unable to provide consent for themselves or their children
- Disease onset after 16 years of age
- Significant exposure to teratogens such as maternal diabetes likely causing heart problems
- Significant coronary heart disease likely causing heart dysfunction
- Other secondary causes explaining the heart condition
- Patients with a confirmed genetic diagnosis (variants of uncertain significance allowed)
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
Duration - Up to 5 years
Participants who undergo routine care are observed with collection of health information, imaging data, and genetic data obtained through whole genome sequencing and other routine clinical investigations.
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
C
Chief Investigator
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
Similar Trials
Frequently Asked Questions
Have more questions? Get in touch with our team for quick support
Not the Right Trial for You?
Explore thousands of other clinical trials that might be a better match.
Sign up to get personalized trial recommendations delivered to your inbox.
Already have an account? Log in here