Frequently asked questions (FAQs)

Inclusion criteria for the RSV GOLD registry are:

Age at death <5 years, date of death >1995 and confirmed RSV disease

If you are able to share data or if you can put us in touch with others who can share RSV-related mortality cases, we kindly ask you to contact us at rsvgold@umcutrecht.nl.

These actually refer to our funding periods. This project builds on the Lancet publication (GOLD I, Scheltema et al, Lancet 2017). In the GOLD II funding period we have expanded the registry and collected many more cases (and also included nosocomial cases). At this moment we are in the GOLD III funding period.

GOLD I: two articles were published with data from GOLD I (Scheltema et al, Lancet 2017), mainly focusing on the characteristics of the children from the datasets and estimating the potential effect of a maternal vaccination.

GOLD II: with the data from GOLD II, Yvette Löwensteyn has published an article about down syndrome as a risk factor for RSV related mortality (Löwensteyn et al, Pediatr Infect Dis J 2020) and in the next publication with the GOLD II data we will focus on community vs. nosocomial and in-community deaths and in-hospital deaths (specifically in L(M)ICs).

GOLD III: we will focus more on filling in the (knowledge) gaps. We hope to collect more cases from L(M)IC. Moreover, we hope to further develop the model of Nienke Scheltema about the potential effect of a maternal vaccination.

Data for the RSV GOLD project will be anonymous and will only be presented as aggregated data. In the Netherlands we obtained an IRB waiver (which we would be happy to share), and the IRB in the Netherlands determined that parent reported informed consent is not required for this secondary, anonymous database registry. If collaborators do prefer to apply for IRB approval, we are happy to support by providing the necessary documents.

We do not have any funding available for our collaborators. We do offer authorship, which includes group authorship for 2 authors per collaborating institution, according to our authorship guidelines.

We welcome both retrospective and prospective RSV-associated mortality cases.
In case you currently do not have the capacity to test for RSV: at this moment, we are unable to work together with hospitals that do not perform RSV testing. However, please do contact us if you are willing to collaborate. If we are setting up a study suitable for a collaboration with you, we could then contact you again.

For cases to be included into our registry, RSV does not has to be the primary cause of death. We do not only include cases of death due to RSV infection, but also mortality cases with RSV infection. However, RSV must in some way be related to the death.

We thoroughly review all data submitted to the registry to ensure data quality. A RSV GOLD team member will review the cases you have entered into our registry and in case we have any remaining questions, we will contact you with the queries.

We collect RSV-related mortality cases into our registry with an online questionnaire through online data management platform Castor EDC. To submit cases via Castor, a Castor account is required. Please fill in this form to create an account.

If you have any questions regarding the online questionnaire, we would be happy to schedule a call to walk through the questionnaire and data submission together.