|The international fetoscopy registry (Information)|
Experience in fetoscopy is still small and scattered in a few centers. Some fetoscopic procedures are performed only rarely and it will be difficult, even for large reference centers, to gather enough number of cases in a reasonable period of time. Small numbers may limit the knowledge of the real performance and side effects of some endoscopic fetal procedures, particularly for complications presenting with low rates.
The constitution of a registry trying to collect prospectively and in a structured manner the information recorded in the centers performing fetoscopy will help to improve our knowledge and to optimize the applications of endoscopic procedures.
The Eurofoetus Programme has therefore constituted an International Fetoscopy Registry, open to all centers willing to report their experience in the field. The information can be entered in structured questionnaires defined by a consensus of all centers involved in the Eurofoetus Programme and other renowned centers with experience in fetal surgery, and stored in a central database.
One particular indication of fetoscopy is the therapy of twin-to-twin transfusion syndrome. This is at present the most common indication of fetoscopy and has been the subject of a separate registration and even a clinical trial.
The registry can preferentially be accessed via the Internet and data can be entered directly. However,hard copies of Clinical Record Forms or floppy disks with auto-executable files for entering data will also be available on request. If you are interested in registering as a participating surgeon, please go to Access to the Studies page.
The registry is actually under construction and is not accessible yet. We will advise you on the home page when new registrations will be possible.