Inherited Cardiac cONditions In Kids
Recruiting now
Conditions studied: Inherited Cardiac Conditions, Cardiovascular Diseases
In brief
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.
Key facts
- Study ID
- NCT05158738
- Run by
- Imperial College London
- People needed
- 300
- Starts
- 2022-09-01
- Expected to finish
- 2026-12-01
- Last updated by the study team
- 2025-03-05
Who can join
Age: any. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- Males or females with a confirmed diagnosis of childhood onset (<16 years) PCM
- Males or females with childhood onset (<16 years) of a rare inherited cardiac condition likely to be a monogenic condition
- Capacity for parents to provide informed consent
- Genotype negative following local standard diagnostic ICC gene panel
- Family members of patients with ICC, both affected and unaffected
You may not qualify if…
- Parents who lack capacity to provide consent on behalf of their children/themselves
- Onset over 16 years
- Significant teratogen exposure (including maternal diabetes) likely to contribute to cardiac dysfunction (following discussion with Cardiologist)
- Significant coronary heart disease likely to contribute to cardiac dysfunction (following discussion with Cardiologist)
- Other secondary causes of cardiac dysfunction likely to explain the phenotype of the patient
- Patients with a confirmed genetic diagnosis (patients with variants of uncertain significance are not excluded).
Where it is running
- Royal Brompton Hospital — London, United Kingdom (enrolling)
- Great Ormond Street Hospital for Children — London, United Kingdom (enrolling)
- Harefield Hospital — Uxbridge, United Kingdom (enrolling)
Full record on ClinicalTrials.gov
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