Collection of biological samples from patients with Marfan syndrome
Constitution of a Biological Collection to Study the Pathophysiology in Marfan Syndrome and Related Syndromes and to Identify Predictive Factors of Disease Progression
This study is collecting blood and urine samples from people with Marfan syndrome to help researchers learn more about the condition and how to improve treatment for patients.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 300 (estimated) |
| Ages | 3 Years to 99 Years |
| Sex | All |
| Sponsor | University Hospital, Toulouse Academic / other |
| Locations | 1 site (Toulouse) |
| Trial ID | NCT04970459 on ClinicalTrials.gov |
What this trial studies
This study aims to establish a biobank of biological samples from patients diagnosed with Marfan syndrome and related conditions. By collecting blood and urine samples during routine check-ups at the Toulouse University Hospital, researchers will create a resource for future studies focused on understanding the disease's pathophysiology and identifying factors that influence its severity and progression. The study emphasizes patient confidentiality and consent, ensuring that samples are used solely for research purposes. The ultimate goal is to enhance the understanding of Marfan syndrome and improve patient outcomes through better-targeted research.
Who should consider this trial
Good fit: Ideal candidates include children aged 3 years and older or adults diagnosed with Marfan syndrome or related syndromes who can provide informed consent.
Not a fit: Patients who are pregnant, breastfeeding, or under legal protection measures may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to improved understanding and management of Marfan syndrome, potentially enhancing the quality of life for affected patients.
How similar studies have performed: While this approach of biological sample collection is common, the specific focus on Marfan syndrome and related conditions may provide novel insights into the disease.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Children aged at least 3 years old or adult with Marfan syndrome or related syndromes * Patients affiliated to or beneficiaries of a social security scheme * Patients able to receive information on the progress of the study and understand the information form to participate in the study. That implies to master the French language and not to be subject to a restriction of rights by the judicial authorities * Patients or legal representative who have given their consent to participate in the study (expression of no objection) Exclusion Criteria: * Patients subject to a legal protection measure (guardianship, curators, or safeguard of justice) * Pregnant or breastfeeding women
Where this trial is running
Toulouse
- Purpan University Hospital — Toulouse, France (Recruiting)
Study contacts
- Principal investigator: Thomas Edouard, MD — University Hospital, Toulouse
- Study coordinator: Thomas Edouard, MD, PhD
- Email: edouard.t@chu-toulouse.fr
- Phone: 5 34 55 85 55
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.