Registry for Ehlers-Danlos Syndrome
Registry of Ehlers-Danlos Syndrome That Collects Clinical, Functional, Genetic, Genealogical, Imaging, Surgical, Treatment, Quality of Life Data. Data Are Linked to Patients' Biological Samples, When Available
Istituto Ortopedico Rizzoli · NCT04133272
This study is creating a registry to gather information from people with Ehlers-Danlos Syndrome to help researchers learn more about the condition and improve care for patients.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 3000 (estimated) |
| Sex | All |
| Sponsor | Istituto Ortopedico Rizzoli (other) |
| Locations | 1 site (Bologna, Emilia-Romagna) |
| Trial ID | NCT04133272 on ClinicalTrials.gov |
What this trial studies
This registry collects and integrates data from patients with Ehlers-Danlos Syndrome to better understand the disease's natural history and genetic correlations. It utilizes a web-accessible platform called GeDI, which complies with GDPR and is designed to streamline data collection and analysis. The registry includes various data domains such as personal information, clinical data, genetic data, and family history to facilitate comprehensive research and improve patient care.
Who should consider this trial
Good fit: Ideal candidates for this registry are individuals diagnosed with Ehlers-Danlos Syndrome, including those with prenatal and fetal diagnoses.
Not a fit: Patients with conditions unrelated to Ehlers-Danlos Syndrome will not benefit from participation in this registry.
Why it matters
Potential benefit: If successful, this registry could enhance understanding of Ehlers-Danlos Syndrome, leading to improved diagnosis and treatment options for patients.
How similar studies have performed: Other studies utilizing disease registries for rare conditions have shown success in improving patient outcomes and advancing research.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * All Ehlers-Danlos Syndrome patients, including prenatal and fetal diagnosis of Ehlers-Danlos Syndrome Exclusion Criteria: * Any condition unrelated to Ehlers-Danlos Syndrome
Where this trial is running
Bologna, Emilia-Romagna
- Irccs Istituto Ortopedico Rizzoli — Bologna, Emilia-Romagna, Italy (RECRUITING)
Study contacts
- Principal investigator: Luca Sangiorgi, MD, PhD, MS — Istituto Ortopedico Rizzoli
- Study coordinator: Marina Mordenti, PhD
- Email: registri.malattierare@ior.it
- Phone: +39 05 6366062
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.
Conditions: Ehlers-Danlos Syndrome, Disease Registry, Natural History Study, Disease Evolution, Genotype-Phenotype Correlation