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Frequently Asked Questions

These FAQs are intended to provide potential newborn screening researchers with guidance regarding the key features of the LPDR.

What is the LPDR?

The Newborn Screening Translational Research Network (NBSTRN) developed the Longitudinal Pediatric Data Resource (LPDR) as resource to facilitate the collection of longitudinal health information on individuals who have a condition detected by newborn screening. The LPDR is a combined system of consensus-based, standardized common data elements (CDEs), electronic data capture, centralized data management, unified data representation and analysis, and case reporting within a FISMA-compliant architecture.

How is health information collected?

The health information is collected by completing case report forms that contain lists of questions (CDEs) organized into sections that mirror a patient’s visit to a physician. The case report forms (CRFs) are housed in the Research Electronic Data Capture (REDCap™) environment and can be completed electronically or on paper. REDCap™ is a FISMA-compliant, secure web application for building and hosting online surveys and databases.

Where can I learn more about REDCap™?

You can learn more about REDCap™ at projectredcap.org.

What types of research projects are using LPDR?

Several newborn screening research projects are currently using the LPDR for studies of the natural history of conditions that are currently part of routine newborn screening (RUSP). The LPDR is also being used for pilots of conditions where newborn screening may improve health outcomes for newborns with these conditions. Additional studies are working to understand the health outcomes and the approach to treatment and management strategies for RUSP conditions.

What information is available in the LPDR?

The LPDR contains lists of CDEs for investigators to organize into CRFs to collect health information on research subjects who have given consent to have their clinical information collected, stored and analyzed for the duration of a defined research study. The health information may include personal health identifiers (PHI), and information is collected during clinical visits and by reviewing the patient’s medical record.

How do you become a registered user of LPDR?

Once you complete the registration process, NBSTRN Coordinating Center (CC) staff will review your application. If you are applying for Level 1 access, you will receive an email notification giving you access and instructions. If you are applying for Level 2 access, NBSTRN-CC staff will contact you for additional information needed for our Onboarding Process.

Who can access the LPDR?

The LPDR is available to researchers, clinicians, newborn screening programs within State Health Departments, and other interested stakeholders. These individuals can use the LPDR for secure data collection, sharing, management, analysis and reporting.

What tools are available as part of the LPDR?

The LPDR is a suite of data collection and analysis tools, including:

  • A REDCap Demo
  • PDF and electronic case report forms
  • The Data Almanac which provides common data elements and associated definitions and annotations
  • Integrate Genomics and Harvest which facilitate integration of genomic and phenotypic data
  • Support from the NBSTRN coordinating center

What is the proper acknowledgement to use when publishing my research using the LPDR?

All NBSTRN-facilitated research should acknowledge the NBSTRN and the fact that it is funded by a contract to the American College of Medical Genetics and Genomics (ACMG) from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health (Contract #HHSN275201800005C).