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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Prof. James C Moon, Professor of Cardiology
+44 (0)2034566020
j.moon@ucl.ac.uk
Mashael Alfarih, Research Fellow
m.alfarih.17@ucl.ac.uk
Cardiomyopathies Cardiomyopathy, Dilated
This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.
This study seeks to discover clinically useful tests to improve the diagnosis of a rare and serious heart muscle disease caused by mutations in a gene called 'Lamin'.
Patients born with lamin gene mutations have apparently healthy hearts initially, they begin experiencing symptoms in their twenties or thirties, and by age 45 the majority have undergone a heart transplant, experienced a major cardiac complication, or have died. Sudden heart rhythm abnormalities are a major cause of sudden death so earlier diagnosis can save lives by enabling timely treatment or implantation of specialised pacemakers (defibrillators). In clinical practice, diagnosis of lamin heart disease currently relies on the genetic test. Very little is known about the detailed imaging features of the hearts of patients with lamin heart disease although advanced echocardiography and cardiac MRI now offer the opportunity to study the health of the heart without the need for radiation.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
You can take part if:
You may not be able to take part if:
This is in the inclusion criteria above
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
Prof. James C Moon, Professor of Cardiology
+44 (0)2034566020
j.moon@ucl.ac.uk
Mashael Alfarih, Research Fellow
m.alfarih.17@ucl.ac.uk
The study is sponsored by University College, London and is in collaboration with NIHR Rare Diseases Translational Research Collaboration; Barts Cardiovascular registry.
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
You can print or share the study information with your GP/healthcare provider or contact the research team directly.
