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    The Development of The Longitudinal Pediatric

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    AMIA
    The document describes the development of the Longitudinal Pediatric Data Resource (LPDR) by the Center for Biomedical Informatics at CHOP to support translational research in newborn screening. The LPDR enables enhanced data collection, management, and analysis across newborn screening disorders and institutions using standardized case report forms in REDCap for 52 conditions. Three prospective studies are currently utilizing the LPDR to collect detailed clinical data over time on newborn screening conditions. The goal is to facilitate research by aggregating health information from diverse settings.

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    The Development of The Longitudinal Pediatric

    Uploaded by

    AMIA
    36 views1 page
    The document describes the development of the Longitudinal Pediatric Data Resource (LPDR) by the Center for Biomedical Informatics at CHOP to support translational research in newborn screening. The LPDR enables enhanced data collection, management, and analysis across newborn screening disorders and institutions using standardized case report forms in REDCap for 52 conditions. Three prospective studies are currently utilizing the LPDR to collect detailed clinical data over time on newborn screening conditions. The goal is to facilitate research by aggregating health information from diverse settings.

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    2013 Summit on Clinical Research Informatics

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    The Development of the Longitudinal Pediatric

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    The document describes the development of the Longitudinal Pediatric Data Resource (LPDR) by the Center for Biomedical Informatics at CHOP to support translational research in newborn screening. The LPDR enables enhanced data collection, management, and analysis across newborn screening disorders and institutions using standardized case report forms in REDCap for 52 conditions. Three prospective studies are currently utilizing the LPDR to collect detailed clinical data over time on newborn screening conditions. The goal is to facilitate research by aggregating health information from diverse settings.

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    Attribution Non-Commercial (BY-NC)
    Download as PDF, TXT or read online from Scribd
    Download as pdf or txt
    36 views1 page

    The Development of The Longitudinal Pediatric

    Uploaded by

    AMIA
    The document describes the development of the Longitudinal Pediatric Data Resource (LPDR) by the Center for Biomedical Informatics at CHOP to support translational research in newborn screening. The LPDR enables enhanced data collection, management, and analysis across newborn screening disorders and institutions using standardized case report forms in REDCap for 52 conditions. Three prospective studies are currently utilizing the LPDR to collect detailed clinical data over time on newborn screening conditions. The goal is to facilitate research by aggregating health information from diverse settings.

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    of 1

    Center for Biomedical Informatics

    The Development of the Longitudinal Pediatric Data Resource to Support Translational Research in Newborn Screening
    1Center

    Contact Information: Email: [email protected] The Center for Biomedical Informatics at CHOP

    Jennifer G. Loutrel1, Stacey Wrazien1, Nicole M. Ferraro1, Jeffrey W. Pennington1, Mark Porter1, Amy M. Brower2, Peter S. White1,3,4
    for Biomedical Informatics, The Childrens Hospital of Philadelphia, Philadelphia, PA; 2Newborn Screening Translational Research Network (NBSTRN) Coordinating Center, American College of Medical Genetics and Genomics, Bethesda, MD; 3Division of Oncology, The Childrens Hospital of Philadelphia, Philadelphia, PA; 4Department of Pediatrics, University of Pennsylvania School of Medicine, Philadelphia, PA

    BACKGROUND
    Newborn Screening Newborn screening (NBS) is used nationwide for the early identification, diagnosis, and treatment of a variety of disorders in order to improve health outcomes for affected infants. Each year in the United States approximately 12,500 infants are found by NBS to have a condition that requires medical intervention. The Newborn Screening Translational Research Network The Newborn Screening Translational Research Network (NBSTRN) Coordinating Center was established in 2008 by the NICHD to facilitate the development of a set of tools and infrastructure to support research in NBS. Because the majority of NBS conditions are rare, translating new discoveries about NBS disorders into clinical practice requires the prospective collection and aggregation of health information across the continuum of clinical care and diverse geographic settings. The Longitudinal Pediatric Data Resource The Center for Biomedical Informatics (CBMi) at the Childrens Hospital of Philadelphia (CHOP) was tasked with creating a long-term follow-up informatics system, the Longitudinal Pediatric Data Resource (LPDR), to enable enhanced data collection, data management, case reporting, and data analysis across disorders and institutions. The LPDR consists of multiple disease-specific REDCap projects, disease-specific paper case report forms (CRFs), and the Data Almanac, an electronic metadata resource available at the point of data entry.

    METHODS

    Generate PDFs for paper data collection

    Obtain standard definitions from disease workgroups and national organizations

    Align existing disease datasets with national standards and grantee specific aims and protocols

    Develop electronic CRFs in REDCap1

    Provide electronic definitions for elements in REDCap at the point of data entry

    Collect feedback from national committees and workgroups using an electronic survey

    RESULTS
    Newborn Screening Visit Demographics and History Parents Siblings Biochemical labs Other labs Pharmacotherapy NBS Hearing screen Consent Status change Growth Development Medica<on Treatment Status Par<cipa<on

    Newborn Screen

    Visit Lab Studies

    Family History

    Visit Findings

    Visit Health History

    Past Health History

    Demographics

    Neonatal Past tes<ng

    Genotype Other

    Socioeconomics

    Procedures

    Emergency Management

    For more information about the Longitudinal Pediatric Data Resource please visit http://www.nbstrn.org.

    Three prospective studies are utilizing the completed case report forms detailing 52 conditions, 88% (46/52) are part of routine NBS and 12% (6/52) are the focus of pilots to determine if NBS is warranted. In the future the LPDR will enable investigators to submit genomic information to analyze along with clinical data.

    CBMi is funded by a subcontract to the American College of Medical Genetics and Genomics (HHSN27520080001C-2-0-1) 8/1/11-9/23/13. 1. Paul A. Harris et al. Research electronic data capture (REDCap)-a metadata-driven methodology and workflow process for providing translational research informatics support, J Biomed Inform. 2009 Apr42(2):377-81.

    Nutri<on

    Diagnosis

    Ini<al Tes<ng

    Consent

    Visit Studies-Other

    Visit Ancillary Care

    Prenatal

    Diagnos<c

    Health status Sick visits

    Care coordina<on Educa<on

    Home monitoring Other tes<ng

    Recommenda<ons Diets

    Study Status

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