The International Children’s Continence Society (ICCS) 2018 Annual Meeting was held in Rome from 26-29 September and covered almost all areas relevant to the pediatric urinary tract and its malfunction. Wout Feitz (Workstream 3 Lead) and Serena Bartezzati (EPAG representative) attended for eUROGEN.
The International Children’s Continence Society (ICCS) 2018 Annual Meeting was held in Rome from 26-29 September and covered almost all areas relevant to the pediatric urinary tract and its malfunction. Wout Feitz (Workstream 3 Lead) and Serena Bartezzati (EPAG representative) attended for eUROGEN.
On the final day, a panel dedicated to “Incontinence & Rare Diseases: anomalies and functional conditions” was chaired by Dr. Giovanni Mosiello (Bambino Gesù Pediatric Hospital). During the panel, Prof. Wout Feitz from (Radboud University Medical Centre) illustrated the potential of the ERNs and in particular, eUROGEN. Dr. Pietro Bagolan (Bambino Gesù Pediatric Hospital) followed by presenting a difficult case of anorectal malformation for which, he explained, it was important to be able to consult colleagues in eUROGEN via the Clinical Patient Management System (CPMS).
AIMAR and ARNET were invited to present the ePAG’s point of view on ERNs. Serena Bartezzati’s presentation was titled “European Reference Networks, a new collaboration in Europe on rare uro-rectal-genital diseases”. She explained the patients’ role in ERNs and the benefits of collaboration with patient experts for all Networks. Her focus was on the importance of transitional care, as anorectal malformations (ARMs) are a complex collection of congenital disorders. Despite successful surgical intervention in the neonatal period, more than one-third of children with ARMs will experience functional problems throughout their lives. The aim is to create a reference model to give children and parents a pathway that guarantees them a better quality of life growing up.
In the last talk, Prof. Alexander von Gontard (Saarland University Hospital) presented research on incontinence in rare disease patients with different grades of mental disability. He demonstrated that mental disability is often linked to incontinence mainly because these patients do not get treated for this problem at the right time nor with the best treatments available. Incontinence is perceived as a minor problem, but if treated could contribute hugely to the person’s well-being and autonomy.
The meeting ended with a project hypothesis for a transversal working group between eUROGEN and other ERNs to deal with incontinence in rare diseases.
The presentations from eUROGEN can be found on the ECP eUROGEN > Library > Other Meetings).
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