NQRN Launching COVID-19 Registry Tracker
Wednesday, May 13, 2020
Posted by: Kasia Januszewski
Published on May 23, 2020, on LinkedIn.com
Online resource will track and offer tools for harmonizing proliferating data banks
As COVID-19 sweeps the world, dozens of clinical registries have been – and continue to be – organized to track it. They vary widely in who and what they examine, and how they gather, format, and report findings.
While these registries all contain valuable information, their lack of coordination and common data definitions limit both their efficiency and the potential use of the data they collect. As a leading national developer and convener of clinical registries of all types, the National Quality Registry Network (NQRN) is establishing the COVID-19 Registry Tracker to help understand and sort the types of data being collected relative to COVID-19. The goal is to aid in collaboration among registries, clinicians, and researchers, provide metadata on the variety of data collection tools that are being launched, and help get the most benefit from the vast amount of data collected.
Among the categories of registries and some of the challenges they face are:
- Surveillance and sentinel registries set up by public health authorities and researchers to monitor and respond to disease spread. Many are geographically focused and vary in how they determine what cases and deaths to report, and coverage is spotty in many areas, leading to confusion about the accuracy and consistency of the data reported
- Clinical case registries set up by medical specialty societies and local researchers to study specific patient populations and specific disease manifestations in different organ systems. For many specialties, multiple registries already exist, often studying overlapping patient groups and diseases, potentially reducing research efficiency
- Online symptom trackers attempting to identify hot spots through symptoms reported by random internet users. While patient-reported data are valuable for assessing treatment and risks, accuracy, consistency, and coverage are challenges for disease tracking
Fundamentally, data collected by these diverse registries vary widely in how they are defined, gathered, and reported. The registry tracker seeks to leverage this information to identify, understand, and monitor COVID-19 information patterns and promote interoperability, as well as potential aggregation where appropriate.
Tracking and coordinating COVID-19 registries
The NQRN COVID-19 Registry Tracker is designed to give a holistic view of what types of data are important to understanding the implications of COVID-19 infection and to address the diversity of data first by categorizing, describing, tracking, and reporting metadata on as many COVID-19 registries as we can find.
The tracker characterizes registries by study type, specialty, case definition, and other demographic attributes. In addition to tracking these characteristics, we will be aggregating resources to aid in building COVID-19 registries, with a focus on interoperability:
Together, with the aforementioned healthcare industry stakeholders, the NQRN Registry Tracker aims to publicize and promote the adoption of standard data practices and be a resource in the fight against COVID-19.
To enter data about your COVID-19 related registry, please fill out our form here.