The Heart Hive
Research type
Research Study
Full title
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, 1 days
Research summary
All patients with heart disease should have the opportunity to participate in research into their condition, to advance knowledge and treatment.
First, we are building an online platform – The Heart Hive – to connect research-willing participants (with heart muscle disease) with active researchers and projects. This platform will enable participants nationwide to enrol in an online research register, upload their own data, and decide which researchers can use it and for what projects, both now and in the future. We will use the latest technologies to facilitate research participation from home, rather than relying on travel to distant specialist centres, e.g. collecting genetic material from saliva using kits sent in the post, and gathering clinical information from participants using a web portal and smartphone app.
We will then use The Heart Hive platform specifically 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.
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.
REC name
HSC REC B
REC reference
19/NI/0026
Date of REC Opinion
26 Feb 2019
REC opinion
Unfavourable Opinion