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Big Data in Organ Transplantation: Registries and Administrative Claims
Author(s) -
Massie A. B.,
Kuricka L. M.,
Segev D. L.
Publication year - 2014
Publication title -
american journal of transplantation
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 2.89
H-Index - 188
eISSN - 1600-6143
pISSN - 1600-6135
DOI - 10.1111/ajt.12777
Subject(s) - medicine , transplantation , united network for organ sharing , data sharing , kidney transplantation , organ transplantation , data quality , data science , intensive care medicine , data mining , computer science , business , pathology , alternative medicine , metric (unit) , marketing , liver transplantation
The field of organ transplantation benefits from large, comprehensive, transplant‐specific national data sets available to researchers. In addition to the widely used Organ Procurement and Transplantation Network (OPTN)‐based registries (the United Network for Organ Sharing and Scientific Registry of Transplant Recipients data sets) and United States Renal Data System (USRDS) data sets, there are other publicly available national data sets, not specific to transplantation, which have historically been underutilized in the field of transplantation. Of particular interest are the Nationwide Inpatient Sample and State Inpatient Databases, produced by the Agency for Healthcare Research and Quality. The USRDS database provides extensive data relevant to studies of kidney transplantation. Linkage of publicly available data sets to external data sources such as private claims or pharmacy data provides further resources for registry‐based research. Although these resources can transcend some limitations of OPTN‐based registry data, they come with their own limitations, which must be understood to avoid biased inference. This review discusses different registry‐based data sources available in the United States, as well as the proper design and conduct of registry‐based research.