View clinical trials related to Inherited Cardiac Conditions.
Filter by: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.
Inherited cardiac conditions (ICC) comprise any hereditary condition which may affect cardiac muscle, vasculature, or conductive system. These conditions sometimes present with sudden cardiac death, and may have significant implications for families. Whilst their prevalence may be rare, our understanding of these conditions has increased over the past decade. ICC Clinics aim to improve the diagnosis, treatment and outcomes of these patients. The NIH has defined a biomarker as "a characteristic that is objectively measured and evaluated as an indicator of normal biological processes, pathogenic processes, or pharmacologic responses to a therapeutic intervention". Biomarkers can indicate disease characteristics, including markers of clinical disease, or indicators of therapeutic response. This study aims to investigate the utility of biomarkers in a large cohort of patients who are attending the ICC clinic. Biomarkers will be related to the presence and severity of cardiovascular disease and other markers of cardiac disease.
This study aims to further understand the experiences of children, their parents and siblings around the time when the child and their family are informed of a diagnosis of an inherited cardiac condition (ICC). The researchers are interested to understand how families experience the process of receiving a diagnosis of an ICC, and explore experiences from multiple perspectives within the family (i.e. parents, children and siblings). The Primary Project Objective: How do children, their parents and siblings experience the communication of a diagnosis of an inherited cardiac condition (ICC)? What is found to be helpful and less helpful? The Secondary Project Objective: To explore qualitatively how families experience the communication of a positive diagnosis for an inherited cardiac condition for a child and will seek the perspectives of the child with the diagnosis, their siblings and parents.