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Overview

Longitudinal Pediatric Data Resource (LPDR):

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

Due to the strict security standards of the tools mentioned above, the LPDR is divided into two Levels of Access. Users must be registered and approved to access Level 1 resources and must go through a more comprehensive onboarding process for Level 2 access.


LPDR Level 1

Case Report Forms (CRFs):

Case Report Forms (CRFs) are clinical data collection forms that contain common data elements (CDEs). They can be used as is or can be customized to a particular research project. PDF CRFs are available for download and electronic CRFs may be accessed through the REDCap Demo.

REDCap™ Demo:

The REDCap demo site will allow users to view, enter, and monitor data on sample electronic case report forms (eCRFs). This will allow users to experience REDCap in a playground environment before starting a study. Please note that no real NBSTRN data will be available and no real clinical data should be entered into this demo site.

Data Almanac:

The Data Almanac is an electronic resource which captures important information about the common data elements (CDEs) included in the LPDR. Both Core CDEs (elements which are applicable to all diseases) and Disease Specific CDEs (elements which are disease specific) are available and may be browsed through a web interface. The metadata includes semantic definitions, acceptable answer choices, and standardized coding.

NBSTRN Support:

Users can ask specific study-related questions of the NBSTRN team and request letters of support for future research projects.

Integrate Genomics:

Coming Soon!


LPDR Level 2

REDCap™:

The LPDR REDCap site will allow users to populate eCRFs for a particular project using CDEs available in the Data Almanac as a base. The site can then be used to perform both data collection and basic data monitoring.

Harvest:

A tool for integrating, discovering, and reporting data collected within the LPDR including genomic information, clinical findings, and laboratory results.


Please Note: Users granted LPDR Level 2 access are allowed to view and utilize all of Level 1 resources.