Welcome to the NewSTEPs Data Repository
The repository is now ready for data entry for basic state profiles, cases and quality indicators. We anticipate updates to occur on a quarterly basis, or sooner if needed. Please continue to check this page for announcements of new features.
2019 State Profile Data is Due
Aggregate Confirmed Case Data is Due
Annual QI Data is Due
How do I request data?
NewSTEPs has established formal processes to request data from the NewSTEPs data repository. 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.
Frequently Asked Questions
The NewSTEPS data repository is a centralized and secure database that can be accessed by authorized users from anywhere and allow each NBS program to explore DATA to meet local program needs.
NBS programs that enter data into the NewSTEPs repository will have access to their own data plus aggregate data from other participating NBS programs.
NBS programs will be able to generate standardized reports based on their data to develop quality improvement initiatives.
Standardized Case Definitions and Quality Indicators are integrated into the NewSTEPs data repository.
NewSTEPs has sought guidance on the data repository and all data sharing activities from both the Colorado Institutional Review Board and the Department of Health and Human Services (HHS) Office of Human Research Protection (OHRP). Both entities have deemed this project to be Non-Human Subject Research. The Colorado Multiple Institutional Review Board Chair has written a letter detailing the process undertaken by NewSTEPs and summarizing the plan.
To facilitate the efforts described, our multi-disciplinary staff includes newborn screening staff from APHL and faculty from the Colorado School of Public Health (CSPH). Careema Yusuf is the staff lead for all data related activities.
NewSTEPs Resources for Data
Each state has the ability to review and enter cases through one designated state contact.
The 8 Quality Indicators that will be used to provide longitudinal comparisons within a program as well as comparisons to aggregate data across programs.
Memorandums of Understanding
State Profile data can be entered prior to the ratification of the MOU. NewSTEPs offers a video detailing the benefits of signing Memorandums of Understanding (MOUs) that are entered into between APHL and newborn screening programs. NewSTEPs has contacted state representatives to help facilitate signatures. We request that all Quality Indicator and Infant level data entry be held until the MOUs are fully ratified.