Connecting NBS Laboratorians and Epidemiologists to Understand Data Capabilities
by Tory Whitten , MPH , senior epidemiologist , Minnesota Department of Health , Newborn Screening , Minnesota Department of Health ; Hiral Desai , MS , specialist , Newborn Screening Bioinformatics ; Careema Yusuf , MPH , manager , NewSTEPs and Guisou Zarbalian , MS , MPH , manager , Newborn Screening
There are long-standing , symbiotic relationships between infectious disease laboratorians and epidemiologists in public health laboratories . But there are also partnerships between newborn screening ( NBS ) laboratorians and epidemiologists within NBS programs . As a former infectious diseases epidemiologist starting a new role in Minnesota ’ s NBS program , Tory Whitten wondered whether a network of NBS epidemiologists existed across the country , as exists in infectious disease . It turns out many NBS programs are utilizing epidemiology , and their epidemiologists answered the call to help create a platform for consistent communication and collaboration . With the interest and support of these epidemiologists , the Minnesota Department of Health , in partnership with APHL , created the NBS Epidemiology User Group to connect and give a platform to NBS epidemiologists .
Building a Knowledge Base
There is growing involvement of NBS epidemiologists in early hearing detection and intervention
( EDHI ), critical congenital heart disease
( CCHD ) and dried blood spot screening ( DBS ) programs , which illustrates the utility and expansion of data processes that are critical for screening methodologies across NBS programs . However , until now , little was known about the epidemiologic methods and other data analytics procedures that programs have implemented to tackle challenges such as missed screening for new infants , determining demographic risk factors of infants lost to follow-up and improving screening algorithms . Understanding these processes guide the mission and goals of the newly formed user group . As of the writing of this article , there are over 40 participants .
While the ultimate goal is to use epidemiology to improve NBS systems , the group ’ s aims include :
Members of the Newborn Screening Epidemiologist User Group
The activities and priorities of this group may serve to strengthen newborn screening data-driven outcome assessments , a seminal goal of APHL ’ s Newborn Screening Technical assistance and Evaluation Program
( NewSTEPs ). We look forward to advancing epidemiology , data analytics , and data quality through the upcoming user group meetings and are thankful to the many epidemiologists and active participants of this user group .
• Learning from NBS epidemiologists across the country how data are being used in specific programs
• Expanding on data analytics capabilities
• Collaborating on new projects
• Learning about program-specific goals
• Sharing tools and resources .
These aims are fundamental to providing support to each other and co-existing as a community for continuous quality improvement .
Connecting and Sharing
The NBS Epidemiology User Group has met virtually three times so far . The initial call kicked off on September 23 , 2020 to get to know epidemiologists from all specialties across the nation . During the second call , participants learned about the Tennessee NBS data experience from Yinmei Li , PhD , MD , state chronic disease epidemiologist . Li explained the procedure for linking vital records or birth data with newborn screening specimen data to identify newborns without a screen , and the uses of newborn screening data to monitor the completeness and timeliness of DBS screening . This information was useful to programs to learn about new methods of identifying newborns without a screen and create summary reports of hospital quality indicator data at the state and local level . During the third call , Ankit Sutaria , MBBS , MS , child health epidemiologist from the Georgia Department of Public Health spoke about the NBS epidemiology initiatives regarding DBS and CCHD . n