Marfan Syndrome Clinical Trial
Official title:
Mortality and Morbidity Outcomes After Aortovascular Surgery in Patients With Marfan Syndrome: A UK Experience
Marfan Syndrome (MFS) is a genetic disease affecting the eyes, skeleton, heart and arteries. Despite MFS affecting multiple organ systems, cardiovascular manifestations are the most serious and life threatening. Approximately 80% of adult MFS patients will have a dilated aortic root by age 40 years with aortic aneurysm and dissection the leading causes of morbidity and mortality. Improvement in diagnostics and medical and surgical interventions have increased life expectancy. However, the natural history and the influence of medical or surgical interventions in the UK population are not fully described. Further, the incidence of aortovascular surgery in this patient group is unknown as MFS is not routinely documented in the National Institute of Cardiovascular Outcome Research (NICOR) national cardiac surgery dataset and therefore, there is currently no mechanism for exploring the aortovascular outcomes for this patient group. The investigators aim to undertake a 10-year secondary analysis of linked national data (National Institute of Cardiovascular Outcome Research (NICOR), Office of National Statistics (ONS), Hospital Episode Statistics (HES)) to identify the UK incidence and outcome of aorto-vascular surgery in patients with Marfan syndrome (MFS). This includes associated hospital length of stay, mortality and morbidity rates. Understanding mortality alongside morbidity will allow the investigators to study further the burdens that the aortovascular manifestations may place on MFS population as well as to continuously evaluate the efficacy of either the health care system or an implemented intervention in place. Further, these metrics will be useful for the stakeholders to effectively prioritise which complications to tackle and to allocate resources toward as well as proactively manage the potential onset of a health event
Marfan Syndrome (MFS) is a genetic disease affecting the eyes, skeleton, heart and arteries. Despite MFS affecting multiple organ systems, cardiovascular manifestations are the most serious and life threatening. Approximately 80% of adult MFS patients will have a dilated aortic root by age 40 years with aortic aneurysm and dissection the leading causes of morbidity and mortality. Improvement in diagnostics and medical and surgical interventions have increased life expectancy. However, the natural history and the influence of medical or surgical interventions in the UK population are not fully described. Further, the incidence of aortovascular surgery in this patient group is unknown as MFS is not routinely documented in the National Institute of Cardiovascular Outcome Research (NICOR) national cardiac surgery dataset and therefore, there is currently no mechanism for exploring the aortovascular outcomes for this patient group. The investigators aim to undertake a 10-year secondary analysis of linked national data (National Institute of Cardiovascular Outcome Research (NICOR), Office of National Statistics (ONS), Hospital Episode Statistics (HES)) to identify the UK incidence and outcome of aorto-vascular surgery in patients with Marfan syndrome (MFS). This includes associated hospital length of stay, mortality and morbidity rates. Understanding mortality alongside morbidity will allow the investigators to study further the burdens that the aortovascular manifestations may place on MFS population as well as to continuously evaluate the efficacy of either the health care system or an implemented intervention in place. Further, these metrics will be useful for the stakeholders to effectively prioritise which complications to tackle and to allocate resources toward as well as proactively manage the potential onset of a health event. ;
| Status | Clinical Trial | Phase | |
|---|---|---|---|
| Terminated |
NCT00763893 -
Study of the Efficacy of Losartan on Aortic Dilatation in Patients With Marfan Syndrome
|
Phase 3 | |
| Recruiting |
NCT05809323 -
Marfan Syndrome Moderate Exercise Trial II
|
N/A | |
| Completed |
NCT04776668 -
Living With Marfan Syndrome and Your Aorta
|
||
| Recruiting |
NCT01949233 -
The Oxford Marfan Trial
|
Phase 2 | |
| Active, not recruiting |
NCT01145612 -
Atenolol Versus Losartan in the Prevention of Progressive Dilation of the Aorta in Marfan Syndrome
|
Phase 3 | |
| Completed |
NCT00723801 -
Effects of Losartan Versus Atenolol on Aortic and Cardiac Muscle Stiffness in Adults With Marfan Syndrome
|
Phase 3 | |
| Completed |
NCT04641325 -
Marfan Syndrome Moderate Exercise Pilot
|
N/A | |
| Recruiting |
NCT06257004 -
Genome-wide Epistasis for Cardiovascular Severity in Marfan Study
|
||
| Completed |
NCT01322165 -
National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions
|
N/A | |
| Recruiting |
NCT05700175 -
Transcriptomic Study of Adult Population With Marfan Syndrome
|
||
| Completed |
NCT00782327 -
Randomized, Double-blind Study for the Evaluation of the Effect of Losartan Versus Placebo on Aortic Root Dilatation in Patients With Marfan Syndrome Under Treatment With Beta-blockers
|
Phase 3 | |
| Not yet recruiting |
NCT05838235 -
Adapted Physical Activity Program (APA) for Effort Rehabilitation of Children and Teenagers With Marfan Syndrome
|
N/A | |
| Recruiting |
NCT02148900 -
Development of a Blood Test for Marfan Syndrome
|
N/A | |
| Active, not recruiting |
NCT05980104 -
Single-Session "Empowered Relief" Class for Marfan Syndrome and Related Conditions
|
N/A | |
| Recruiting |
NCT02050113 -
Complex Aortic Aneurysm Repair Using Physician Modified Endografts and Custom Made Devices
|
N/A | |
| Completed |
NCT00001641 -
Study of Heritable Connective Tissue Disorders
|
N/A | |
| Completed |
NCT01715207 -
Comparison Study of the Effect of Aliskiren Versus Negative Controls on Aortic Stiffness in Patients With Marfan Syndrome Under Treatment With Atenolol
|
Phase 3 | |
| Completed |
NCT05516043 -
Safety and Performance of POLYTHESE® Vascular Prosthesis
|
||
| Recruiting |
NCT04776681 -
Living With Marfans and Your Aorta: Surgical Outcomes Study
|
||
| Completed |
NCT03236571 -
Cardiorespiratory and Muscular Rehabilitation of Children and Young Adults With Marfan Syndrome.
|
N/A |