Frequently Asked Questions
The NewSTEPs data repository is a centralized and secure database that can be accessed by authorized users from anywhere and allows 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 for the purposes of performing quality improvements within the NBS system.
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.
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.
State Profile data can be entered prior to the ratification of the MOU.
We request that all Quality Indicator and Infant level data entry be held until the MOUs are fully ratified.
To facilitate the efforts described, our multi-disciplinary staff includes newborn screening staff from APHL. Please contact newsteps@aphl.org with any questions.
The Newborn Screening and Genetic Program at APHL offers technical assistance (TA) and training for newborn screening (NBS) programs seeking guidance to implement enhancements within their programs. If you would like to request TA, complete the application for newborn technical assistance and training form.
Specific projects in need of support may fall under screening implementation, laboratory and follow-up practices, educational activities, continuity of operations planning (COOP), information technology systems, workforce development, administration, and various quality improvement activities.
This form is designed to help programs request TA and training. The information you provide will help our team understand your specific needs, identify the appropriate subject matter experts, and coordinate timely support. In this form, you will be asked to describe the issue or goal you are seeking assistance with, the type of support you believe would be most helpful, relevant background information, and your preferred timeline. Once your request is submitted, our team will receive the details and follow up with you to discuss next steps. All information shared through this form will be used solely for the purpose of providing technical assistance.