Genetic Aortic Diseases and Cardiovascular Complications. An Observational Survey of Risk Factors.

Condition(s) studied

Investigational drug(s) / intervention(s)

Journey to diagnosis: Questions relating to the course and experience/history of the disease from the onset of symptoms to confirmation of diagnosis; accessibility to referral facilities for treatment and follow-up.

Quality of life, functional health and well-being: Qestionnaires

Awareness and self-esteem, acceptance of the condition: questionnaire related to the quality of life and self-care

psychological and physical well-being: questionnaire to describe psychological and physical well-being.

Study summary

The aim of this observational study is to define the behavioural and cardiovascular risk factor profiles of patients with genetic aortopathies. The main questions it aims to answer are:

* How do the interconnections between lifestyle, stress, psychological condition, perception of illness, and state of health influence each other in this population?
* Beyond traditional risk factors, additional emerging factors should be considered, including pregnancy-related complications, sedentary lifestyle, early menopause and depression. The interplay between eating disorders, lifestyle factors and autoimmune or inflammatory bowel diseases remains poorly understood.

Eligibility

Primary outcome measure(s)

• Journey to diagnosis — 15 months
  The mean, median, standard deviation and interquartile range will be used for continuous variables, whereas frequency and percentage will be applied for nominal and categorical variables. The Shapiro-Wilks test will be used to assess the Gaussian distributions.
• Quality of life, functional health and well-being — 15 months
  The mean, median, standard deviation and interquartile range will be used for continuous variables, whereas frequency and percentage will be applied for nominal and categorical variables. The Shapiro-Wilks test will be used to assess the Gaussian distributions.
• Awareness and self-esteem, acceptance of the condition — 15 months
  The mean, median, standard deviation and interquartile range will be used for continuous variables, whereas frequency and percentage will be applied for nominal and categorical variables. The Shapiro-Wilks test will be used to assess the Gaussian distributions.
• psychological and physical well-being — 15 months
  The mean, median, standard deviation and interquartile range will be used for continuous variables, whereas frequency and percentage will be applied for nominal and categorical variables. The Shapiro-Wilks test will be used to assess the Gaussian distributions.

Trial sites (1)

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