Research opportunities
Below you can find information about opportunities to take part in research, including the GenetICC Research Register.
Taking part in research is always voluntary. Choosing not to take part will not affect the care you receive from our service.
The GenetICC Research Register
The GenetICC Research Register allows us to collect cardiac and genetic information from participating patients seen by the Oxford Inherited Cardiac Conditions (ICC) service and their relatives.
This information helps researchers learn more about inherited heart conditions and improve care for patients and families. The register also allows us to identify people who may be eligible for future research studies.
Taking part is entirely voluntary and will not affect the care you receive. Information that identifies you, such as your name or date of birth, is not shared outside your clinical care team and will never appear in research publications.
GenetICC is managed by the NIHR Biomedical Research Centre: Oxford and has Research Ethics Committee approval (Reference 09/H0606/108).
Examples of GENETICC published research
The GenetICC register has supported several important research studies, including the following.
Research into genetic changes in the TTN gene, helping us better understand the factors that influence the development of dilated cardiomyopathy (DCM).
Titin-related familial dilated cardiomyopathy: factors associated with disease onset | European Heart Journal | Oxford AcademicResearch into genetic changes in the FLNC gene, which has improved our understanding of how these variants can cause different forms of cardiomyopathy.
Hypertrophic cardiomyopathy caused by filamin-C variants has restrictive and extracardiac features and a distinctive ECG - ScienceDirect
Who can take part
Anyone attending the ICC Clinic who is offered genetic testing can join the register, regardless of their genetic test result.
Written informed consent is required.
Contact details for the GenetICC Research Register
To find out more, please email icc.clinical@ouh.nhs.uk or ask your clinical team at your next ICC appointment.
HCM-DTI Study
Aims
Understanding early heart changes in hypertrophic cardiomyopathy (HCM).
This study uses advanced MRI scans to investigate changes during the early stages of HCM. The aim is to improve early detection and future care.
Who can take part
You can take part if you:
are aged 16-40 years
have a genetic change associated with HCM, even if you do not currently have signs or symptoms of HCM.
Contact details for HCM-DTI Study
For more information about the above study, inclusion criteria, study assessments or other queries please email: jack.bell@magd.ox.ac.uk
FOREST-GBR Study
Aims
Monitoring heart changes with new medications for HCM.
This study uses MRI scans to examine how newer treatments called cardiac myosin inhibitors, such as mavacamten, affect heart structure and function over time.
Who can take part
People with HCM and experience symptoms related to the condition, who have:
evidence of obstruction in the heart or are being considered for treatment with cardiac myosin inhibitors
no pacemaker or implantable cardioverter-defibrillator (ICD).
Contact details for FOREST-GBR Study
For more information about the above study, inclusion criteria, study assessments or other queries please email: jack.bell@magd.ox.ac.uk
FORTITUDE Clinical Trial
Aims
Testing a new treatment for non-obstructive HCM.
This clinical trial is evaluating a new medication designed to improve symptoms and quality of life for people with non-obstructive HCM.
Who can take part
You can take part if you:
have non-obstructive HCM
experience symptoms related to HCM.
Contact details for FORTITUDE Clinical Trial
For more information about the above study, inclusion criteria, study assessments or other queries please email: jack.bell@magd.ox.ac.uk
ENCORE-DCM Study
Aims: Understanding changes in heart muscle structure and function in dilated cardiomyopathy (DCM). This study aims to improve understanding of early disease development, symptoms and recovery, including in people who carry a genetic change associated with DCM but have no current signs of heart disease.
Who can take part
Previous participants in the Oxford GO-DCM study.
People with a genetic change associated with DCM, including those without current signs or symptoms.
People with DCM, including those whose heart function has improved or returned to normal with treatment.
Contact details for ENCORE-DCM Study
For more information about the above study, inclusion criteria, study assessments or other queries please email: anosh.sivashanmugarajah@ouh.nhs.uk
KINSHIP-DCM Clinical Trial
Aims
Testing a new investigational medication called danicamtiv for people with symptomatic genetic or familial DCM.
This clinical trial will investigate whether danicamtiv can improve heart function and quality of life compared with placebo and assess its safety and tolerability.
Who can take part
Adults aged 18 years or over.
People with a confirmed diagnosis of genetic or familial DCM.
People experiencing symptoms related to DCM that affect daily life.
Additional eligibility criteria apply.
Contact details for KINSHIP-DCM Clinical Trial
For more information about the above study, inclusion criteria, study assessments or other queries please email: brian.wang@ouh.nhs.uk
