Inherited Cardiac cONditions In Kids

Launched by IMPERIAL COLLEGE LONDON · Dec 2, 2021

Keywords

ClinConnect Summary

This clinical trial, called "Inherited Cardiac Conditions In Kids," is focused on understanding heart muscle diseases, specifically cardiomyopathies, in children. Researchers aim to gather valuable information about these conditions by using an online platform called The Heart Hive. This platform allows families and patients with heart muscle disease to enroll in the study and share their medical information. The goal is to identify the genetic factors that cause cardiomyopathy and how these factors influence the severity and progression of the disease. Ultimately, this research hopes to lead to new and personalized treatments for affected children.

To participate, children under 16 years old must have a confirmed diagnosis of a childhood onset heart condition. The study is open to both boys and girls, and parents or guardians need to provide informed consent. Participants will have their DNA analyzed and will be monitored over time to track their health progress. It's important to note that while the study welcomes families of affected and unaffected patients, some individuals may be excluded, such as those with certain other heart diseases or those who do not meet the eligibility criteria. This study is an opportunity for families to contribute to important research that could improve understanding and treatment of inherited heart conditions in children.

Gender

ALL

Eligibility criteria

• 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).