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US Disease Data Project - Pilot Phase Overview

Background

The Data Dashboard project is a collaborative initiative by CSTE, ASTHO, and Johns Hopkins University, along with epidemiologists and public health officials, to develop a publicly available dashboard for data sharing, visualization and analyses of selected diseases, focusing initially on vaccine preventable disease case counts.

Project Resources

See the CSTE Sharepoint for the following resources:

  • Data Dashboard Project Charter
  • Joint Data Dashboard Project Technical Workgroup Overview
  • Prior meeting slides

Pilot Scope

This pilot phase invites state, tribal, local, and territorial health departments to participate in testing the data submission and visualization system. The specifications provided have been developed with input from the Joint Data Dashboard Steering Committee (SC) and Technical Advisory Group (TAG).

Pilot Diseases

Three vaccine-preventable diseases have been selected for the pilot phase:

  1. Measles (caused by measles virus)
  2. Pertussis (caused by Bordetella pertussis bacteria)
  3. Invasive Meningococcal Disease (caused by Neisseria meningitidis bacteria)

Additional diseases will be added after the pilot phase.

Pilot Timeline

  • Data Start Date: December 29, 2024 (start of MMWR week 1, 2025)
  • Data Period: Through present
  • Pilot Status: Active development

Key Principles

Voluntary Participation

Provision of data is voluntary and based on individual jurisdiction capabilities and policies.

Aggregate Data Only

  • No line-level data will be collected
  • Data are subject to suppression in accordance with individual jurisdiction policies, regulations, and laws
  • Ensures patient privacy and minimizes reidentification risk

Data Updates and Versioning

  • Data should be updated and back-populated on a regular basis
  • Records of prior versions will be maintained
  • Recent data may be incomplete as investigations proceed

Data Integrity

  • JHU does not manipulate or suppress data once received
  • Jurisdictions submit only data they are comfortable posting publicly
  • JHU will only post what is supplied by jurisdictions

Privacy During Pilot

Data for the pilot will not be released publicly. Once the pilot is completed and additional states are invited to participate, the dashboard and reported data are intended to become public.

Project Goals

The major goal of this project is establish the processes, standards, data formats and build a preliminary database and dashboard, with the aim of producing epidemiologically sound data that is as standardized as possible, while recognizing individual variations in how and when data are collected and made available to participating health departments. Some differences can be accommodated during the pilot phase.

Contact

For questions about the pilot program, please contact the project team through the appropriate channels established by your jurisdiction's liaison.