Network of Experts

Data Governance Workgroup

Mission Statement

The Data Governance Workgroup's mission is to assist in ensuring the appropriate access and use of the LPDR data to empower the broadest spectrum of newborn screening investigators.


Data Governance Workgroup Roster


If you are interested in participating on one of our workgroups, please contact us.

Clinical Integration Group

Mission Statement

The mission of the Clinical Integration Group is to facilitate implementation of the Longitudinal Pediatric Data Resource (LPDR), maintaining the integrity and compatibility of the tools and projects of the NBSTRN, and provide consultation and recommendation to NBSTRN.


Clinical Integration Group roster


If you are interested in participating on one of our workgroups, please contact us.

Bioethics and Legal Issues Workgroup

Mission Statement

This workgroup will address the ethical, legal and social implications (ELSI) of all NBSTRN activities by: 1) developing resources for investigators who conduct newborn screening research, and 2) making ELSI recommendations to the Steering Committee and other workgroups regarding ELSI issues. 
 


Bioethics and Legal Issues Workgroup roster


If you are interested in participating on one of our workgroups, please contact us.

Steering Committee

The primary focus of the Steering Committee is to oversee and facilitate work of the NBSTRN and the other workgroups.

NBSTRN Mission Statement and Goals: The Mission of the Newborn Screening Translational Research Network (NBSTRN) is to improve the health outcomes of newborns with genetic or congenital disorders by means of an infrastructure that allows investigators access to robust resources for newborn screening research. This infrastructure will:

  1. Consist of a network of clinical centers and clinical and public health laboratories with virtual or real specimen and data repositories.
  2. Be linked by a comprehensive, state-of-the-art information technology system for the acquisition, storage and retrieval of data critical to research and, ultimately, to the incorporation of genetics/ genomics into the practice of medicine and the improvement of public health and newborn screening programs.
  3. Be structured, with appropriate privacy protection, to facilitate the development of comprehensive patient clinical histories, new screening methods, the design and implementation of clinical trials for new therapeutic interventions, and the support of longitudinal studies of the health of children identified through newborn screening.
  4. Incorporate appropriate mechanisms to address ethical, legal and social issues relating to newborn screening research.

     

The goals of NBSTRN are: 

  1. To enable biomedical investigators, with appropriate IRB permission and privacy protections, to access dried bloodspots and other biological specimens in a site-independent manner for research.
  2. Support the needs of investigators to:
    • To evaluate the predictive value of biomarkers through early phase clinical/epidemiological studies.
    • To facilitate the development and assessment of new methods and technologies to improve the capacity for early identification through newborn screening.
    • To identify candidate diseases for inclusion in expanded newborn screening.
    • To determine the effectiveness of treatments and long-term outcomes by means of studies involving screened and treated patients.
  3. To encourage collaboration among researchers and rapid dissemination of information to promote progress and avoid fragmentation of effort.
  4. To develop policies and procedures that support privacy and confidentiality of patient-related information as well as appropriate rules by which to conduct the research.

Steering Committee roster


If you are interested in participating on one of our workgroups, please contact us.