Research on inherited heart conditions in children

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study focuses on children diagnosed with inherited cardiac conditions, particularly cardiomyopathy, and their unaffected parents. Participants will enroll through an online platform called The Heart Hive, where they can upload their health data for research purposes. The study aims to collect genetic and clinical information over a five-year period to identify genetic variants and environmental factors that influence disease progression and treatment response. By analyzing this data, the researchers hope to enhance understanding of these rare conditions and improve patient outcomes.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* 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

Exclusion Criteria:

* 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's running

• Royal Brompton Hospital
  London, United Kingdom Recruiting
• Great Ormond Street Hospital for Children
  London, United Kingdom Recruiting
• Harefield Hospital
  Uxbridge, United Kingdom Recruiting

Study contacts

• Principal investigator: James Ware — Imperial College London
• Study coordinator: Katherine Josephs
• Email: k.josephs@imperial.ac.uk
• Phone: 0207 594 9459

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.