Retrospective study: Clinical outcomes of cranio-spinal surgery in patients with Ehlers-Danlos syndrome and hypermobility syndrome

Study description

Craniocervical instability (CCI) can be difficult to understand. This retrospective study aims to examine how patients with Ehlers-Danlos syndrome and hypermobility syndrome progress before and after CCI surgery.

Study population

Patients who have undergone surgery for craniocervical instability at our center in previous years, with a minimum postoperative period of 6 months and a maximum of 10 years since the intervention.

Confidentiality and data protection

All data will be handled confidentially and in accordance with the current regulations on personal data protection. All information will be coded and anonymised, and no identifying data will be used in the analyses or in any publications arising from the study.

Procedures and data sources

Participation in this study is limited exclusively to the review of clinical information already available in the medical records and the completion of an online questionnaire, in order to assess postoperative evolution and current quality of life. No additional visits or interventions will be required, and no changes will be made to the usual clinical follow-up.

Information and contact 

All patients operated on at our center who meet the above-mentioned inclusion criteria have recently been contacted and invited to take part in this study.

If you have undergone surgery at our clinic in recent years and, for any reason, have not received our message or have not been able to view it, and you would like to receive further information about this study or confirm your participation, you can contact the research team at the following email address: research@drgilete.com