Background

According to Eurostat¹, 5,421,000 live births were registered in the EU27 in 2008. Considering the incidence of the bladder exstrophy complex², we expect about 146 classic bladder exstrophy, 46 male epispadias, 13-27 cloacal exstrophy and 11 female epispadias patients will be born in the EU27 every year. However, routine antenatal screening ultrasound has changed the actual incidence of these conditions due to termination. According to the EUROSCAN study³ conducted in 12 European countries between 1996 and 1998, monitoring over 709,000 births, 52% of the bladder exstrophy cases were antenatally detected in Europe. The study showed that 80% of antenatally detected cases of bladder exstrophy were terminated. According to this study, the incidence of bladder exstrophy in Europe was 1:37,000 fetuses, but only 1 baby in every 71,000  was actually born. What is the actual incidence of the exstrophy complex in Europe at the moment?

Aim of the Study

We propose a 12-month prospective study, the aim of which was to define the number of babies born with bladder exstrophy, cloacal exstrophy and epispadias in Europe.

Methods

We shall identify one local investigator for each European centre of paediatric surgery/paediatric urology and urology where the exstrophy complex could potentially be treated. The local investigators will be responsible for reporting babies treated in their institutions for bladder/cloacal exstrophy and/or epispadias. The list of the centres enrolled in the study is available on the Countries and centres page.

During the 12 months study period, every 3 months, we shall send you an e-mail inviting you to:

• report new babies;

• or to state that no new cases have been diagnosed in your institution during the previous 3-month period.

The e-mail will have a link to the reporting page. You will have simply to enter the username and to fill the form. The form is straightforward and does not ask any information which could potentially identify the patient. Data on the incidence of the bladder exstrophy complex in the different European countries will be provided at the end of the study.

Acknowledgments

This study has been designed by Mr Cervellione. 

Mr Dickson (Manchester-U.K.), Prof Caione (Rome-Italy), Prof Bogaert (Leuven-Belgium), and Prof Gearhart (Baltimore-U.S.A.) have offered their critical revision.

The ESPU has provided IT support.

Disclosure

No funding has been received by the Investigators for this study.

¹http://epp.eurostat.ec.europa.eu/cache/ITY_PUBLIC/3-03082009-AP/EN/3-03082009-AP-EN.PDF

²Expected incidence of the exstrophy complex: