The HeartHive Cardiomyopathy Study
Research type
Research Study
Full title
A longitudinal observational study of self-reported cardiomyopathy in the Heart Hive
IRAS ID
246395
Contact name
James Ware
Contact email
Sponsor organisation
Imperial College, London
Duration of Study in the UK
10 years, 0 months, 0 days
Research summary
All patients with heart disease should have the opportunity to participate in research into their condition, to advance knowledge and treatment.
This is an observational study of 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.
We will collect information about participants diagnosis, DNA for genetic analysis, and then follow participants’ clinical progress.
We 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.
This study uses The Heart Hive - an international, online registry of patients with self-reported clinically diagnosed cardiomyopathy. Participants enrol and upload their own data through the website. It is the first research study that will be offered to registry participants and delivered through The Heart Hive platform.
This application is for the HeartHive Cardiomyopathy study only, and does not include the Heart Hive platform (registry and database). Although this application does not include the Heart Hive platform, where necessary, relevant information about the platform is included in this form due to the integration of this study and the platform.REC name
HSC REC B
REC reference
19/NI/0168
Date of REC Opinion
14 Oct 2019
REC opinion
Further Information Favourable Opinion