I am a consultant in paediatric infectious diseases at Imperial College Healthcare NHS Trust and Professor of Practice at Imperial College.
I run both HIV and Congenital infection clinics at St Mary’s Hospital in London, and I am ward-attending consultant for Paediatric Infectious Diseases 4 months per year. I am a member of PENTA-ID and participate in HIV treatment trials for children. I have been actively involved in development of international courses for education for Paediatric Infections for many years, working with PENTA and the European Society for paediatric Infectious Diseases (ESPID). From 2018 – 2021, I was a member of the board of ESPID. I am now a Trustee on the board of the ESPID Foundation.
In 2020, with colleagues from around Europe, we set up CCMVNET (email@example.com ) – an international network built around a registry of children with congenital CMV, currently I am chair of the network. Our aim is to learn as much as possible about this condition, and promote collaboration for research into prevention and treatment.
Fundamentally, I am a front line clinician who can bring people together – children, families and peer supporters ,clinicians, laboratory scientists, epidemiologists, virologists, pharmacologists, and trialists,– all the team that we will need to change the future for children with congenital infections.
Keynote Lecture Abstract
cCMVnet: The importance of a European Registry
The birth prevalence of congenital CMV (CCMV) is 0.48% in high income countries, equal to around 20,000 children per year in Europe (European Union, 4.17 million births, 2019), of whom only 10% may be diagnosed “symptomatic” at birth. Long term sequaelae, occur in up to 60% of symptomatic and 15% of “asymptomatic” neonates, around 4,000 European children per year, but frequently the CCMV diagnosis is never made. Currently no European counties have national screening for CCMV, either ante-natal or post-natal. There remain many questions about CCMV and its consequences.
As routine neonatal investigations, including hearing screening and brain imaging have become more prevalent, the original dichotomous description of CCMV as either symptomatic or asymptomatic has become more difficult to ascribe. To better understand the spectrum of CCMV a new scoring of neonatal presentation is required, including imaging and diagnostic virology. Most case series of outcomes in children with CCMV are short term, have small numbers, and incomplete investigations. Thus treatment interventions, are difficult to assess, especially for children less symptomatic at birth. No data is prospectively collected on side effects of valganciclovir or other antivirals. The European CCMV registry (firstname.lastname@example.org), was set up in 2020 and more than 900 children are enrolled, data is collected on: epidemiology and clinical characteristics; risk factors for long term sequelae; prognostic neonatal markers; treatment strategies (ante-natal and post-natal); and adverse treatment effects. In the future we believe this will be an ideal network on which to build trials of new interventions, we encourage all our colleagues to join.