Patients with spina bifida face many challenges growing up, including urological problems, which significantly impact their quality of life. Therefore, a multidisciplinary approach is needed, and ERN eUROGEN and ERN ITHACA work together.
The Orphanet coding for human dysraphisms is outdated and requires re-classification according to the latest expert clinical knowledge from both ERNs. A joint meeting to continue this work was held from 20-21 October 2022, kindly hosted by Giovanni Mosiello in his healthcare provider, Ospedale Pediatrico Bambino Gesù in Rome, a member of ERN eUROGEN.
Twenty-two participants from both ERNs, including Michelle Battye, ERN eUROGEN Programme Manager, attended the meeting, concentrating on a detailed discussion to validate and agree with the new classification and definitions proposed to Orphanet. A further meeting is planned in January 2023 to finalise the work.