Workgroups

The NBSTRN is implementing several workgroups and welcomes participation from clinicians, researchers, bioinformaticians, laboratorians, patients, parents, advocates and others.

The ethical, legal and social issues in newborn screening research are unique. Join this group to discuss emerging policies and support researchers as they plan studies.

Commitment: Virtual meeting Quarterly; In person meetings 2019, 2020,  2021, 2022 and 2023.

Understanding the health outcomes of newborns identified through newborn screening is key to understanding the benefits of early diagnosis and treatment. Join this group to develop question and answer sets used for longitudinal studies. 

Commitment: Virtual meeting Quarterly; In person meetings 2020 and 2022.

 

Data sharing and secondary use has the potential to accelerate discoveries in rare disease research. Join this group to help NBSTRN develop and implement best practices in data governance.

Commitment: Virtual meeting Quarterly; In person meetings 2019, 2021 and 2023

The NBSTRN team works to develop tools and resources that advance cutting-edge research.  Join this group to discuss emerging technologies and treatments, review national and international research initiatives.

Commitment: Virtual meeting Quarterly; In person meetings 2019, 2020 and 2021.

The pipeline of conditions that are candidates for newborn screening continues to grow.  Join this group to create tools that support the validation of new technologies, track findings from pilots and enable discovery through secondary use of data.

Commitment: Virtual meeting Quarterly; In person meetings 2019, 2020 and 2021.

State newborn screening programs are key to the implementation of new conditions for nationwide screening.  Join this group to guide development of tools and resources to track, analyze and visualize data from pilots.

Commitment: Virtual meeting Quarterly; In person meetings 2019 and 2020.