Congenital CMV Monthly International Virtual Clinics: A cCMVnet European Initiative

To the Editors: We wish to inform the PIDJ readership of an online clinic and educational activity that has been in place over the last 2 years; the CCMVnet virtual clinic aims to improve the care of infants with congenital cytomegalovirus (CCMV) infection throughout Europe and beyond. CCMV is the most common congenital viral infection globally and a leading cause of sensorineural hearing loss and neurodevelopmental disability in children. The CCMV network (CCMVnet) is a European initiative promoting international collaboration, research and educational activities in CCMV (https://ccmvnet.org/). In 2020 the network established the European CCMV registry collecting data on epidemiology, clinical characteristics, long-term sequelae and treatment of infants with CCMV. Membership of CCMVnet is open to all healthcare professionals and scientists working with children with CCMV. Members of CCMVnet may contribute clinical cases to the registry and to research proposals and studies. The registry is a user-friendly RedCap database accessible online. Up until July 2023, we have data for 1058 children. Members of CCMVnet also can participate in the educational activities of the network such as the biannual webinars, focusing on a particular aspect of CCMV infection, and the virtual clinics. The latter constitutes a forum for clinicians to review active complex cases and treatment strategies. From February 2021, via an online platform, monthly virtual clinics were established and continue to take place on the last Wednesday of each month, at 17.00 CET. Each case is allocated 20 minutes for presentation and discussion. Nineteen monthly virtual clinics have run so far, reviewing 75 patients. Approximately 40 clinicians across multiple specialties (general pediatrics, neonatology, pediatric infectious diseases, audiology, otolaryngology, obstetrics and virology) and countries (Spain, United Kingdom, Greece, Germany, Estonia, Iceland, Denmark and Armenia) have attended each clinic. More recently cases from outside the WHO European Region have been presented (Malaysia and India). Recommendations from the CCMVnet steering committee, and other experts in the field attending the clinics were provided and summarized as anonymized feedback to the presenter. Importantly, these presentations have stimulated lively interesting discussions on clinical challenges. Issues discussed so far have included: the management of preterm infants with CCMV, indications for initiation and duration of treatment, treatment-related side effects, brain MRI imaging considerations, and assessment and management of hearing impairment. Cases discussed as well as being useful for the presenters are also of great value for the rest of the attendees who can join the clinic, listen to and comment on the cases presented. Overall, this online activity has received highly positive feedback. The clinic highlights gaps in knowledge and treatment guidelines and the urgent need for further clinical research. In the future, a bank of anonymized complex CCMV cases will be available as a training tool on the CCMVnet website (https://ccmvnet.org/). The virtual clinic is open for cases to be submitted for discussion. Therefore, we encourage clinicians from Europe and beyond who wish to discuss their patients or join CCMVnet to contact our team (email address: [email protected]) and visit our website.