Inherited Cardiac cONditions In Kids: Understanding the Genetics and Outcomes of Paediatric Inherited CardiacConditions

Status: Recruiting
Location: See all (3) locations...
Intervention Type: Other
Study Type: Observational
SUMMARY

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.

Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:

• 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

Locations
Other Locations
United Kingdom
Great Ormond Street Hospital for Children
RECRUITING
London
Royal Brompton Hospital
RECRUITING
London
Harefield Hospital
RECRUITING
Uxbridge
Contact Information
Primary
Katherine Josephs
k.josephs@imperial.ac.uk
0207 594 9459
Backup
Chief Investigator
0330 128 2294
Time Frame
Start Date: 2022-09-01
Estimated Completion Date: 2026-12-01
Participants
Target number of participants: 300
Related Therapeutic Areas
Sponsors
Collaborators: Great Ormond Street Hospital for Children NHS Foundation Trust, Royal Brompton & Harefield NHS Foundation Trust
Leads: Imperial College London

This content was sourced from clinicaltrials.gov