The Clinical Patient Management System (CPMS) enables highly specialized surgical teams across Europe to share their views and discuss cases in a secure environment where all aspects of patient confidentiality are respected. ERN eUROGEN experts recently used CPMS to discuss a case, focusing on perineal hypospadias associated with a congenital perineal lesion.

ERN eUROGEN received the case of a baby with differently developed genitalia. Genetic testing showed that the baby was genetically a boy. The patient was examined and extremely rare congenital urogenital anomalies were identified that would require relatively urgent highly specialized surgery. A urogenital tumour due to a developmental malformation needed to be removed during the surgery.

This particular case was discussed in a virtual panel through the CPMS, as it appeared to be a very rare and complex case that even ERN eUROGEN’s experts had not seen before and which has also not been reported in the medical literature.

ERN eUROGEN’s surgeons found it invaluable to exchange views with colleagues who may have had experience with similar patients, to discuss in detail the advantages and disadvantages of the several options available and the optimal approach. Furthermore, views could be exchanged on aftercare and follow-up with a view to identifying best practice and spreading this across our network and beyond. ERN eUROGEN also follows a multidisciplinary approach which includes extensive consultation with the parents, as was the case for this newborn baby.

The highly specialized surgery was performed in February 2020 at one of ERN eUROGEN’s expert healthcare provider centres. The patient was discharged after 6 days and the follow-up appointment after 14 days showed an intact urethra and no infection. Because of the outbreak of the coronavirus it was not possible for the treating physicians to follow up the baby through face-to-face visits, but the remote consultation confirmed that the wound was healing nicely and the patient was doing well at home. After extensive consultation with the parents and the entire disorders of sex development multidisciplinary team that were involved in treating the patient, it has been decided to postpone further surgery until the patient is older.

Since CPMS went live in November 2017, ERN eUROGEN experts have discussed over 100 such cases. As the ERNs enlarge over the coming year, we look forward to welcoming new clinicians, training them to use CPMS, and having them join other network activities. We need to connect securely to our colleagues across Europe to discuss the best care for our patients, now more than ever.  

Paediatric urological surgeons from Erasmus MC Rotterdam, NL

ERN eUROGEN includes complex genital reconstructions (DSD)

For further information on ERN eUROGEN, please see: www.eurogen-ern.eu