The National Coordinating Center for the HRSA Genetic Service Collaboratives (NCC), in partnership with the Newborn Screening Translational Research Network (NBSTRN), worked together to develop a set of questions and answers and a data collection tool to support longitudinal data collection.  This tool, the Longitudinal Pediatric Data Resource (LPDR), is being used by a number of research studies and now NCC is pleased to introduce the tool in states through public health teams. This represents a major milestone after many years of development and work by states, the NCC, and NBSTRN teams. 

Project Overview


Goal: To demonstrate the feasibility of answering the 14 public health questions to understand public health long-term follow-up by entering data into and utilizing the LPDR. 

Phase 1 - The target is to have between 4-5 states enter data in April, but no later than May 15, 2016.  
Phase 2 - A phase in of additional states will occur as NCC and NBSTRN review the results of the initial phase 1 of this project, and make adjustments. Ideally, by the end of the calendar year 2016 all 22 states will have entered data into the LPDR.   

Project Requirements: 
Signed data sharing/participation agreement--this will be discussed on the informational webinars and is very similar to current agreements utilized by the NBSTRN in the Virtual Repository of Dried Bloodspots (VRDBS). 

Phase 1: data entry of the elements to answer the 14 public health questions, no later than May 15, 2016. 

Participation at an in-person meeting.  Funds will be available for 2 people from the participating states.  Additional states and RCs are invited to participate; however, NCC does not have funding to cover travel/hotel.  This meeting will be webcast as well. 

Post-phase 1 project review and discussion of challenges and successes. 

Review of the data dashboard.

Informational Webinars

To kick-off the NCC/RC-NBSTRN State Project of the LPDR, two informational webinars were given to provide background about the LPDR, expectations for participating in the project, and to answer any questions about the project.  Listed below are the archived webinars.

February 26th at 1:00 PM ET
Archived webinar (available here

February 26th at 4:00 PM ET
Archived webinar (available here)