In order to provide a rapid solution to the ongoing fragmented collection of pediatric data, we are proposing to begin now with data aggregation from a range of existing registries, observational and prospective studies, and single-institution cohorts. Our aim is to make aggregated data RAPIDLY available to investigators for secondary use. Wherever possible, we will facilitate data harmonization through the use of standardized, pediatric-specific case report forms for COVID-19.

Current phase

In this first phase, we are collaborating with clinicians and scientists globally to aggregate de-identified (or anonymized, depending on the country of origin) patient-level data to be hosted on a secure, HIPAA-compliant cloud-based platform at Boston Children’s Hospital. Contributors will have access to this shared platform to perform queries and export data. A committee composed of data contributors along with representation from the coordinating center will provide guidance on levels of access and export functionality. All data will remain under the ownership of the data contributors. We will identify a core set of elements that can be standardized to support queries across data submitted from the various patient cohorts.

Final platform

The end-product will be a cloud-based platform that provides access to an integrated dataset assembled from data across all participating organizations. The RAPID-19 Repository will be freely accessible to data contributors who can access and export patient-level data for approved studies. The platform will include embedded tools and applications to enable collaborative analyses on large-scale data extracts in secure workplaces.

Onboarding

Organizations interested in participating must be able to share de-identified (or anonymized) patient-level data, including case report forms, data dictionaries, and study protocol.

Please contact us at contact@RAPID-19.org if you are interested in participating.

Study documents

Repository protocol

Study forms and tools

Check back soon to download standardized pediatric case report forms for COVID-19.

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