Psychosocial impact of Aortovascular manifestations in Marfan syndrome
We are assisting Barts ICU Sister Rosalie Renamagboo in her PhD studies of the psychosocial impact on patients with Marfan syndrome who are diagnosed with an aortovascular condition
Marfan Syndrome is a genetic disease affecting the eyes, skeleton, heart and aorta. People affected by Marfan Syndrome are often diagnosed with aortovascular conditions and many require surgery to prevent them dying from the disease at an early age. Living with an aortovascular diagnosis in Marfan Syndrome affects patients' mental health, well-being and quality of life in ways that are not well understood.
Rosalie's PhD research aims to address the current gaps in our knowledge in this area and provide the information needed to design appropriate interventions for patients with an aortovascular diagnosis in Marfan Syndrome.
Aortic Dissection Awareness UK & Ireland has provided support to Rosalie through patient representation on the Steering Group for her study; by reviewing documents and by providing opportunities for her to meet Marfan syndrome patients who have had an aortic dissection. We are certain that her research will have significant benefits for patients.
Patients & members of the public interested in this study and how it will handle patient data should read these two official documents:
NOTICE TO THE PUBLIC: Marfan Syndrome Mortality & Morbidity Outcomes Study
