About this trial
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 criteria
This trial does not accept healthy volunteersQualifiers
signed onformed consent
Ability to speak, read and write in Italian
Disqualifiers
None
Trial population
Patients with TAA either syndromic or non-syndromic followed at the Cardiovascular Genetic Centre, IRCCS Policlinico San Donato
Trial design
Cohort
Prospective
Treatments tested in this trial
Journey to diagnosis
Other interventionQuestions 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
Other interventionQestionnaires
Awareness and self-esteem, acceptance of the condition
Other interventionquestionnaire related to the quality of life and self-care
psychological and physical well-being
Other interventionquestionnaire to describe psychological and physical well-being.
Treatment groups
Trial outcomes
Primary outcomes
Journey to diagnosis
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
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
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
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.
Sponsors and contacts
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