Psychological support for adults with Marfan syndrome
Psychological Help in Patients With Marfan Syndrome: the Role of Quality of Life, Coping Mechanisms, Psychosocial Aspects and Self-esteem Levels
This study looks at why adults with Marfan syndrome seek psychological support and how their condition affects their mental health and coping skills.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 125 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | IRCCS Policlinico S. Donato Academic / other |
| Locations | 1 site (San Donato Milanese, Lombardia) |
| Trial ID | NCT05712577 on ClinicalTrials.gov |
What this trial studies
This observational study aims to identify the factors that lead adult patients with Marfan syndrome to seek psychological support. It will explore how the clinical manifestations of Marfan syndrome affect psychosocial aspects, self-esteem, and coping mechanisms. Participants will undergo psychological interviews and complete various self-report questionnaires to assess their mental health and quality of life. The study focuses on understanding the internal variables that drive the need for psychological support among these patients.
Who should consider this trial
Good fit: Ideal candidates for this study are adults diagnosed with Marfan syndrome who are currently receiving follow-up care at the Cardiovascular Genetic Centre.
Not a fit: Patients with cognitive deficits may not benefit from this study due to the nature of the assessments involved.
Why it matters
Potential benefit: If successful, this study could enhance the psychological well-being and quality of life for patients with Marfan syndrome.
How similar studies have performed: While there may be limited studies specifically targeting psychological support in Marfan syndrome, similar approaches in other rare diseases have shown promise in improving patient outcomes.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Subjects affected by Marfan syndrome; * Subjects currently in follow-up at Cardiovascular Genetic Centre, IRCCS Policlinico San Donato; * Signed informed consent. Exclusion Criteria: * Subjects with cognitive deficits
Where this trial is running
San Donato Milanese, Lombardia
- IRCCS Policlinico San Donato — San Donato Milanese, Lombardia, Italy (Recruiting)
Study contacts
- Principal investigator: Alessandro Pini, MD — Cardiovascular-Gentic Centre, IRCCS Policlinico San Donato
- Study coordinator: Alessandro Pini, MD
- Email: alessandro.pini@grupposandonato.it
- Phone: +390252774705
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.