Literature DB >> 30815127

Phenotype Detection Registry System (PheDRS) - Implementation of a Generalizable Single Institution Clinical Registry Architecture.

John D Osborne1, Adarsh Khare1, Donald M Dempsey1, J Michael Wells1, Matt Wyatt1, Geoff Gordon1, Wayne H Liang1, James Cimino1.   

Abstract

Precision medicine requires that groups of patients matching clinical or genetic characteristics be identified in a clinical care setting and treated with the appropriate intervention. In the clinical setting, this process is often facilitated by a patient registry. While the software architecture of federated patient registries for research has been well characterized, local registries focused on clinical quality and care have received less attention. Many clinical registries appear to be one-off projects that lack generalizability and the ability to scale to multiple diseases. We evaluate the applicability of existing registry guidelines for registries designed for clinical intervention, propose a software architecture more practical for single-institution clinical registries and report the implementation of a generalizable clinical patient registry architecture at the University of Alabama at Birmingham (UAB).

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Year:  2018        PMID: 30815127      PMCID: PMC6371346     

Source DB:  PubMed          Journal:  AMIA Annu Symp Proc        ISSN: 1559-4076


  30 in total

1.  Using a simple patient registry to improve your chronic disease care.

Authors:  David D Ortiz
Journal:  Fam Pract Manag       Date:  2006-04

2.  Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

Authors:  Paul A Harris; Robert Taylor; Robert Thielke; Jonathon Payne; Nathaniel Gonzalez; Jose G Conde
Journal:  J Biomed Inform       Date:  2008-09-30       Impact factor: 6.317

3.  Single source information systems to connect patient care and clinical research.

Authors:  Martin Dugas; Bernhard Breil; Volker Thiemann; Jens Lechtenbörger; Gottfried Vossen
Journal:  Stud Health Technol Inform       Date:  2009

4.  Registries made simple.

Authors:  Bruce A Bagley; Jason Mitchell
Journal:  Fam Pract Manag       Date:  2011 May-Jun

5.  ARX--A Comprehensive Tool for Anonymizing Biomedical Data.

Authors:  Fabian Prasser; Florian Kohlmayer; Ronald Lautenschläger; Klaus A Kuhn
Journal:  AMIA Annu Symp Proc       Date:  2014-11-14

Review 6.  Clinical registries and quality measurement in surgery: a systematic review.

Authors:  Anne M Stey; Marcia M Russell; Clifford Y Ko; Greg D Sacks; Aaron J Dawes; Melinda M Gibbons
Journal:  Surgery       Date:  2015-02       Impact factor: 3.982

7.  The CERTAIN Registry: a novel, web-based registry and research platform for pediatric renal transplantation in Europe.

Authors:  L Plotnicki; C D Kohl; B Höcker; K Krupka; A Rahmel; L Pape; P Hoyer; S D Marks; N J A Webb; O Söylemezoglu; R Topaloglu; A J Szabo; T Seeman; E A Marlies Cornelissen; N Knops; R Grenda; B Tönshoff
Journal:  Transplant Proc       Date:  2013-05       Impact factor: 1.066

8.  A Chado case study: an ontology-based modular schema for representing genome-associated biological information.

Authors:  Christopher J Mungall; David B Emmert
Journal:  Bioinformatics       Date:  2007-07-01       Impact factor: 6.937

9.  Ulcer healing time and antibiotic treatment before and after the introduction of the Registry of Ulcer Treatment: an improvement project in a national quality registry in Sweden.

Authors:  Rut F Oien; Henrik W Forssell
Journal:  BMJ Open       Date:  2013-08-19       Impact factor: 2.692

10.  Patient focused registries can improve health, care, and science.

Authors:  Eugene C Nelson; Mary Dixon-Woods; Paul B Batalden; Karen Homa; Aricca D Van Citters; Tamara S Morgan; Elena Eftimovska; Elliott S Fisher; John Ovretveit; Wade Harrison; Cristin Lind; Staffan Lindblad
Journal:  BMJ       Date:  2016-07-01
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