An observational study in Rare Diseases, Marfan Syndrome and Psychology, Social, sponsored by IRCCS Policlinico S. Donato. Recruiting at 1 site in Italy. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2024-01-12.
Sponsored by IRCCS Policlinico S. Donato · Observational
The goal of this observational study is to identify key factors leading to psychotherapy or psychological support in adult subjects with Marfan syndrome (MSF). the main questions it aims to answer are:
Patients following psychological interview during follow-up visits will be enrolled in the study.
The following self-report questionnaires will be used in understanding the impact the syndrome has on mental health and quality of life:
71 studies on the registry are indexed under Marfan Syndrome; 16 are open to participants now.
This study's planned enrollment of 125 is close to the median of 119 across 40 observational studies indexed under Marfan Syndrome.
Browse Marfan Syndrome studies →IRCCS Policlinico S. Donato is the lead sponsor of 101 studies on the registry; 51 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Subjects with MFS who have requested psychological support/psychotherapy and patients who have never requested psychological support/psychotherapy.
Exclusion Criteria:
MFS patients who followed psychological support/psychotherapy
Other: Questionnaire
MFS patients who never followed psychological support/psychotherapy
Other: Questionnaire
Rosenberg Self- Esteem scale
Short Form 36 scale
Coping orientation to the problems experienced - New Version in Italian
Outcome Questionnaire - version 42.5
Questionnaire performance
Statistical analysis between the two experimental groups using independent samples t-tests for continuous variables and associations for categorical variables. Questionnaire scoring: - COPE NVI: scoring between 60 and 240; higher score means better outcome
Time frame: 8 Months
Questionnaire performance
Statistical analysis between the two experimental groups using independent samples t-tests for continuous variables and associations for categorical variables. Questionnaire scoring: - Short Form-36: scoring between 0 and 100; higher score means better outcome
Time frame: 8 Months
Questionnaire performance
Statistical analysis between the two experimental groups using independent samples t-tests for continuous variables and associations for categorical variables. Questionnaire scoring: - Rosenberg Self- Esteem scale: scoring between 0 and 30; higher score means better outcome
Time frame: 8 Months
Questionnaire performance
Statistical analysis between the two experimental groups using independent samples t-tests for continuous variables and associations for categorical variables. Questionnaire scoring: - Outcome questionnaire 42.5: socring between 0 and 180; clinical cut-off value is 64, higher score means worse outcome
Time frame: 8 Months
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
Sign in to followQuestions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.
Sign in to join the discussion. Reading takes no account; posting does. You choose a display name, and a pseudonym is the default.
Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.
IRCCS Policlinico S. Donato