RecruitingOBSERVATIONAL

Inherited Cardiac cONditions In Kids

This research, called 'Inherited Cardiac cONditions In Kids' (ICONIC), aims to understand inherited heart conditions, especially those affecting children and their families. It uses a special online database called The Heart Hive, where families can share information about their heart muscle disease (cardiomyopathy). Researchers hope to learn why some children develop these conditions and how they progress. They will collect details about people's diagnoses, genetic information (from DNA), and track their health over time. The main goals are to find out which genes cause these conditions, understand what factors influence how serious the disease becomes, and ultimately develop new, personalised treatments.

At a glance

Status

Recruiting

Sponsor

Imperial College London

Enrolment target

300

Start

01 Sep 2022

Estimated completion

01 Dec 2026

Inherited Cardiac Conditions Cardiovascular Diseases

What is this study about?

When children are diagnosed with certain heart conditions that run in families, it's a really challenging time. This study, called Inherited Cardiac cONditions In Kids (ICONIC), aims to gather important information that can help us better understand these conditions. The main focus is on heart muscle diseases, known as cardiomyopathies, but it also includes other inherited heart conditions that appear before a child is 16 years old. By collecting details from many families, researchers hope to improve how we diagnose, treat, and support children with these conditions in the future.

To do this, the study uses an online platform called The Heart Hive. This is a special database where people living with inherited heart conditions, and their families, can easily share information. Researchers hope to find out what exactly causes these diseases, how they progress and what factors might make them better or worse. They will collect information about your child's diagnosis, gather DNA samples (which hold genetic information), and follow their health journey over time. This includes looking at things like hospital visits, scans, and treatments.

Ultimately, the goal is to discover new and personalised ways to help children with inherited heart conditions. By understanding more about the genes involved and how different factors affect the disease, scientists hope to develop treatments that are specifically tailored to each individual, leading to better care and better lives for these children.

Key takeaways

The study aims to understand inherited heart conditions in children.
It uses an online platform (The Heart Hive) to gather health and genetic information.
Participation involves sharing medical records and providing blood/saliva samples.
The goal is to find new, personalised treatments for these conditions.
This is an observational study; no new treatments are given.
Volunteers can withdraw at any time.

Who may be eligible?

This study is looking for children under 16 years old who have been diagnosed with an inherited heart condition, especially heart muscle disease (cardiomyopathy). It also includes other inherited heart conditions that doctors believe are caused by a single gene.

Parents of these children are also invited to take part, and sometimes other family members, whether they have the condition or not, might be asked to join too. This is particularly for families where the child's genetic tests haven't yet found a clear cause for their condition.

However, some children might not be suitable if their heart problems are thought to be caused by other things, like certain exposures during pregnancy or other heart conditions like severe blockages in the heart's arteries. Also, if a child already has a confirmed genetic diagnosis for their heart condition, they might not be included, though they might be considered if the genetic finding isn't completely clear.

Quick self-check

Is your child under 16 years old?
Does your child have a diagnosed inherited heart condition?
Do you, as a parent, have the capacity to give consent?
Has your child had genetic testing for their heart condition but the cause isn't fully clear yet (variants of uncertain significance)?
Are you willing to provide a blood or saliva sample for your child and yourself?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

If you decide to take part in this study, you and your child will be sharing information primarily through The Heart Hive, an online platform. The study will ask for your permission to access and use information that is already collected as part of your child's routine NHS care, such as details about their diagnosis, medical scans, and genetic test results (especially those done by NHS England).

In addition to using existing information, the study may ask for a small blood sample from your child. If a blood sample isn't possible, a saliva (spit) sample might be collected instead. Parents taking part will also be asked to provide a blood or saliva sample and give permission for their health information to be used, including results from their own routine check-ups like heart scans. Other family members who join will also provide a blood or saliva sample and share their health information. For families where a patient has sadly passed away, the study might also ask if stored samples taken before or during a post-mortem examination can be used.

These procedures, like providing a blood or saliva sample, are considered to have very low risk. The study will continue to collect information about your child's health journey over several years, combining their routine medical records with the samples provided. There are no extra hospital visits or medications specifically for this study.

Potential risks and benefits

Taking part in this study won't directly improve your child's health in the short term, but the information gathered will be incredibly valuable for understanding inherited heart conditions better. This could lead to better treatments and diagnoses for children in the future. The risks involved are very low, mainly just the slight discomfort from a blood test or the simple process of providing a saliva sample. All your personal information will be kept confidential and handled securely. You are completely free to withdraw from the study at any time, for any reason, without it affecting your child's medical care in any way.

Locations (3)

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

Common questions

What is 'The Heart Hive'?

The Heart Hive is an online platform or database that connects patients and families with inherited heart conditions to researchers. You can share your health information through it to help studies like this one.

Will my child receive any new medication or treatment in this study?

No, this study is about observation and collecting information. Your child will continue with their usual NHS care and treatments; no new medications or treatments are given as part of the study.

What kind of information will be collected about my child?

The study will collect details about your child's diagnosis, existing medical scans, genetic information from DNA (via blood or saliva samples), and follow their health progress over time from their routine medical records.

How long will my child be involved in this study?

The study aims to follow children and their families over a period of 5 years, collecting information about their health journey during this time.

Is my family's information kept private?

Yes, all data collected for the study will be handled with strict confidentiality and kept secure to protect your family's privacy.

How to find out more

Katherine Josephs

k.josephs@imperial.ac.uk 0207 594 9459 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.