Registry
What is the registry?
The cCMVnet registry is a European database of children with congenital CMV. All included children must have a diagnosis of cCMV confirmed by saliva, blood or urine PCR within 21 days of life or the diagnosis has to be made prenatally. The primary objective of the registry is to collect data on cCMV : epidemiology, clinical characteristics, prognostic value of neonatal variables, outcomes and treatment strategies. The registry is a user-friendly RedCap database accessible online.
CCMVNET European Registry – now has more than 1000 children enrolled – thanks to all the families and clinicians!
Currently (07/23) we have data for 1058 children. 862 belong to the Spanish database and 196 to the European database – Greece (144), Italy (21), Belgium (12), and the UK (10).
Why should I join the registry?
Reasons to join the cCMVnet registry include
- Enable your current and future patients to benefit from enrollment in the international registry
- Contribute to better understanding of cCMV epidemiology
- Contribute to better understanding of outcomes for children with cCMV
- Contribute to better understanding of treatment outcomes and side effects for children with cCMV
- Collate and easily access your own institutional data
”It is only with data on thousands of children with congenital CMV that we will have better understanding of the full spectrum of this disease and its impact.” Dr Hermionie Lyall Previous Chair of CCMVnet
What information does the registry collect?
Parental consent is obtained to enter anonymised data on
- Pregnancy
- Initial presentation and neonatal period
- Investigations
- Treatment
- Follow Up
What ethics does the registry have?
- The main site in Spain has ethical approval
- All sites that subsequently join must obtain local or national ethical approval
How can I join the registry?
- The registry is free to join
- The registry is open to all healthcare professionals involved in the care of children with cCMV
- To join email ccmvnet@gmail.com with a statement of interest
- We will send you a pack with the protocol, ethics application, parent information and consent details
Trouble Shooting
We are able to advise on entering data into RedCAP, if having difficulties please contact ccmvnet@gmail.com
Governance & Data Protection
The EU general data protection regulation governs how the personal data of individuals in the EU may be processed and transferred. All records entered into the registry are anonymised and password protected. Each study site must obtain local and national ethical approval.
Please contact ccmvnet@gmail.com with any complaints or concerns.
Next step: please join!
Who can become a member?
Pediatricians/ neonatologists and all healthcare professionals / scientists with a special interest in children with cCMV .
Although cCMVnet was developed within ESPID, colleagues from outside EU are welcomed!
Send us an email at ccmvnet@gmail.com expressing an interest
