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Linkage of the CF foundation patient registry with the pediatric health information system database

Jonathan D Cogen1, Matt Hall2, Deena R Loeffler3

  • 1Division of Pulmonary & Sleep Medicine, Department of Pediatrics, University of Washington, Seattle, Washington.

Pediatric Pulmonology
|March 20, 2019
PubMed

Insights

Linking the Cystic Fibrosis Foundation Patient Registry (CFFPR) with the Pediatric Health Information System (PHIS) created a large, generalizable dataset for pediatric cystic fibrosis (CF) research. This combined data enhances understanding of in-hospital CF care.

Area of Science:

  • Biomedical Informatics
  • Pediatric Pulmonology
  • Data Science

Background:

  • The Cystic Fibrosis Foundation Patient Registry (CFFPR) lacks comprehensive inpatient data.
  • The Pediatric Health Information System (PHIS) contains valuable inpatient data from children's hospitals.
  • Integrating CFFPR and PHIS data can address critical research gaps in pediatric cystic fibrosis (CF) care.

Purpose of the Study:

  • To assess the feasibility of linking the CFFPR and PHIS databases.
  • To create a robust, linked dataset for pediatric CF research.
  • To determine the generalizability of linked CF patient data.

Main Methods:

  • Patient-level linkage of CFFPR and PHIS databases using indirect identifiers.
  • A stepwise, deterministic linkage approach was employed.
  • Validation cohort established for accuracy assessment and generalizability analysis.

Main Results:

  • Successfully linked 91% (10,660/11,735) of eligible pediatric CF patients.
  • Achieved 100% accuracy in a single-center validation cohort.
  • Linked cohort showed minor demographic differences (birth year, ethnicity, hospital affiliation) compared to unlinked patients, but remained largely generalizable.

Conclusions:

  • Demonstrated successful linkage of CFFPR and PHIS databases.
  • Created a large, generalizable pediatric CF cohort.
  • The linked dataset is suitable for advancing CF-related research, particularly on in-hospital treatment and management.
Abstract

Keywords:
adolescentchildcystic fibrosis

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