Data Requests

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The NewSTEPs Data Repository collects state profile data, annual quality indicators, monthly timeliness quality indicators and case level data from each participating NBS program in the United States including 50 states, the District of Columbia, Puerto Rico and Guam.

 

While NewSTEPs encourages data requests from the data repository for research and quality improvement purposes, NewSTEPs will in no event share state-level quality indicator data or case data unless explicit permission has been granted by the NBS program. Any data sharing request for information that is not public/ available will be channeled through APHL’s governance structure. Each data sharing request will be directed to the Data Review Workgroup, which is charged with providing expertise to make recommendations to NewSTEPs staff and the NewSTEPs Steering Committee on any requests made for data collected within the NewSTEPs Data Repository.

State Profile Data

Types of State Profile Data Available for Request
Disorders
  • Screening Methods and Targets
  • Equipment
  • Proposed/ Actual Implementation Date for Universal Screening
Policies
  • Specimen Collection
  • Specimen Transport, Receipt, Storage and Retention
  • Consent
  • Follow-Up
  • Analysis
  • Operations: Emergency/ Disaster Support
  • Operations: Community of Operations Plan
Adding to the NBS Panel
  • General Information
  • Laboratory Test Addition Requirements and Challenges
  • Point of Care Test Addition Challenges
Fees
  • Newborn Screening Funding Sources
  • Fees
  • Fee Collection
  • Fee Use Details
Program Structure
  • NBS System Organizational Chart
  • Follow-Up on Unsatisfactory Specimens
  • Follow-Up on Borderline Results
  • Laboratory Test Performance Evaluation
  • Formal Communication Structure
  • NBS Program Staffing Level
  • Program Information
  • Laboratory Operating Hours
  • Follow-Up Operating Hours
  • Inclement Weather Work Policy

Cases Data

Quality Indicator Data