Imperial cardiac conditions registry
| ISRCTN | ISRCTN17200091 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN17200091 |
| IRAS number | 338595 |
- Submission date
- 25/07/2025
- Registration date
- 01/10/2025
- Last edited
- 01/10/2025
- Recruitment status
- No longer recruiting
- Overall study status
- Ongoing
- Condition category
- Circulatory System
Plain English summary of protocol
Background and study aims
This study is part of a larger research programme called AIMM (Artificial Intelligence for Multimorbidity). The specific part we're talking about is called the Imperial Cardiac Conditions Registry (ICC Registry). It focuses on people with inherited or structural heart conditions. The goal is to use artificial intelligence (AI) to study heart test results—like ECGs, pacemaker data, and heart scans—to better understand how these conditions develop and change over time. This could help doctors diagnose these conditions earlier and provide more personalised care.
Who can participate?
The study includes NHS patients who:
-Are over 18 years old
-Have had heart tests as part of their NHS care
-Have a known or suspected inherited heart condition
What does the study involve?
This is a retrospective study, which means it uses information that has already been collected during routine NHS care. There are no new tests or appointments, and patients will not be contacted.
What are the possible benefits and risks of participating?
There are no direct benefits or risks to participants, as the study only uses existing data. However, the findings could help improve care for people with inherited heart conditions in the future.
Where is the study run from?
Imperial College London (UK)
When is the study starting and how long is it expected to run for?
The study is already underway and is expected to continue as part of the ongoing AIMM research programme. There is no fixed end date yet.
Who is funding the study?
British Heart Foundation (UK)
Who is the main contact?
Dr Amanda Varnava, amanda.varnava@nhs.net
Dr Joseph Barker, joseph.barker@imperial.ac.uk
Dr Fu Siong Ng, f.ng@imperial.ac.uk
Contact information
Public
Head of Department
Department of Cardiology
Hammersmith Hospital
London
W12 0HS
United Kingdom
| Phone | +44 20 3313 1000 |
|---|---|
| amanda.varnava@nhs.net |
Principal Investigator
Reader in Cardiac Electrophysiology
Hammersmith Hospital
London
W4 3ET
United Kingdom
| Phone | +44 20 3313 1000 |
|---|---|
| f.ng@imperial.ac.uk |
Scientific
Clinical Research Fellow
Hammersmith Hospital
London
W12 0HS
United Kingdom
 ORCID ID |
0000-0002-5483-9608 |
|---|---|
| Phone | +44 20 3313 1000 |
| joseph.barker@imperial.ac.uk |
Study information
| Study design | Retrospective observational cohort study |
|---|---|
| Primary study design | Observational |
| Secondary study design | Cohort study |
| Study setting(s) | Hospital |
| Study type | Other |
| Participant information sheet | No participant information sheet available |
| Scientific title | Imperial Inherited Cardiac Conditions Registry |
| Study acronym | ICC Registry |
| Study objectives | A subregistry of patients with inherited and structural cardiac phenotypes curated from the "Artificial Intelligence for Multimorbidity (AIMM)" database for deep phenotyping and AI-enabled cardiac disease discovery. |
| Ethics approval(s) |
Approved 06/07/2025, Health Research Authority (2 Redman Place, Stratford, London, E20 1JQ, United Kingdom; +44 207 104 8000; contact@hra.nhs.uk), ref: 24/HRA/2562 |
| Health condition(s) or problem(s) studied | Inherited cardiac conditions |
| Intervention | Participants enrolled in this study will receive standard medical care through a tertiary inherited cardiac conditions clinic. Following referral, patients undergo routine assessment and management as per clinical guidelines, including clinical evaluation, genetic counselling, diagnostic testing, and ongoing follow-up. Observation begins at the point of referral and continues until death, representing a lifelong follow-up period. |
| Intervention type | Other |
| Primary outcome measure | Incident disease diagnoses will be recorded using International Classification of Diseases (ICD-10) codes, as compiled by the Imperial College Healthcare Trust Coding Department through systematic review of electronic health records and clinical documentation. Procedure data will be obtained using OPCS codes, collected through the same methodology. |
| Secondary outcome measures | There are no secondary outcome measures |
| Overall study start date | 01/07/2023 |
| Completion date | 01/07/2033 |
Eligibility
| Participant type(s) | Patient |
|---|---|
| Age group | Adult |
| Lower age limit | 18 Years |
| Upper age limit | 120 Years |
| Sex | Both |
| Target number of participants | 10,000 |
| Total final enrolment | 10000 |
| Key inclusion criteria | >18 years attending tertiary care for suspected inherited cardiac conditions |
| Key exclusion criteria | <18 years |
| Date of first enrolment | 01/01/2000 |
| Date of final enrolment | 01/01/2025 |
Locations
Countries of recruitment
- England
- United Kingdom
Study participating centre
Hammersmith Campus
Du Cane Rd
London
W12 0HS
United Kingdom
Sponsor information
University/education
Research Governance and Integrity Team (RGIT)
Imperial College London and Imperial College Healthcare NHS Trust Room 215, Level 2, Medical School Building
Norfolk Place
London
W2 1PG
England
United Kingdom
| Phone | +44 207 594 9480 |
|---|---|
| RGIT@imperial.ac.uk | |
| Website | https://www.imperial.ac.uk |
"ROR" |
https://ror.org/041kmwe10 |
Funders
Funder type
Charity
Private sector organisation / Trusts, charities, foundations (both public and private)
- Alternative name(s)
- the_bhf, The British Heart Foundation, BHF
- Location
- United Kingdom
Results and Publications
| Intention to publish date | 01/08/2026 |
|---|---|
| Individual participant data (IPD) Intention to share | No |
| IPD sharing plan summary | Not expected to be made available |
| Publication and dissemination plan | Findings from the ICC Registry will be submitted for publication in high-impact, peer-reviewed journals relevant to cardiology, genetics, and clinical artificial intelligence. Public engagement and dissemination will be curated with the Imperial CardiacEP.ai Patient and Public Involvement, Engagement and Participation group. |
| IPD sharing plan | Individual participant data cannot be shared owing to ethical restrictions without enrollment to the AIMM study |
Editorial Notes
28/07/2025: Trial's existence confirmed by NHS HRA.
