Literature DB >> 26419642

A Comprehensive Assessment Tool for Patient Registry Software Systems: The CIPROS Checklist.

D Lindoerfer1, U Mansmann.   

Abstract

BACKGROUND: Patient registries are an important instrument in medical research. Often their structure is complex and their implementation uses composite software systems to meet the wide spectrum of challenges.
OBJECTIVES: For the implementation of a registry, there is a wide range of commercial, open source, and self-developed systems available and a minimal standard for the critical appraisal of their architecture is needed.
METHODS: We performed a systematic review of the literature to define a catalogue of relevant criteria to construct a minimal appraisal standard.
RESULTS: The CIPROS list is developed based on 64 papers which were found by our systematic review. The list covers twelve sections and contains 72 items.
CONCLUSIONS: The CIPROS list supports developers to assess requirements on existing systems and strengthens the reporting of patient registry software system descriptions. It can be a first step to create standards for patient registry software system assessments.

Entities:  

Keywords:  Checklist; patient registry software system; technical requirements

Mesh:

Year:  2015        PMID: 26419642     DOI: 10.3414/ME14-02-0026

Source DB:  PubMed          Journal:  Methods Inf Med        ISSN: 0026-1270            Impact factor:   2.176


  5 in total

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

Authors:  John D Osborne; Adarsh Khare; Donald M Dempsey; J Michael Wells; Matt Wyatt; Geoff Gordon; Wayne H Liang; James Cimino
Journal:  AMIA Annu Symp Proc       Date:  2018-12-05

2.  Design of the Familial Hypercholesterolaemia Australasia Network Registry: Creating Opportunities for Greater International Collaboration.

Authors:  Matthew I Bellgard; Caroline E Walker; Kathryn R Napier; Leanne Lamont; Adam A Hunter; Lee Render; Maciej Radochonski; Jing Pang; Annette Pedrotti; David R Sullivan; Karam Kostner; Warrick Bishop; Peter M George; Richard C O'Brien; Peter M Clifton; Frank M Van Bockxmeer; Stephen J Nicholls; Ian Hamilton-Craig; Hugh Js Dawkins; Gerald F Watts
Journal:  J Atheroscler Thromb       Date:  2017-03-24       Impact factor: 4.928

3.  Design of a framework for the deployment of collaborative independent rare disease-centric registries: Gaucher disease registry model.

Authors:  Matthew I Bellgard; Kathryn R Napier; Alan H Bittles; Jeffrey Szer; Sue Fletcher; Nikolajs Zeps; Adam A Hunter; Jack Goldblatt
Journal:  Blood Cells Mol Dis       Date:  2017-01-27       Impact factor: 3.039

4.  Data for the elaboration of the CIPROS checklist with items for a patient registry software system: Examples and explanations.

Authors:  Doris Lindoerfer; Ulrich Mansmann
Journal:  Data Brief       Date:  2017-08-03

5.  A web-based, patient driven registry for Angelman syndrome: the global Angelman syndrome registry.

Authors:  Kathryn R Napier; Megan Tones; Chloe Simons; Helen Heussler; Adam A Hunter; Meagan Cross; Matthew I Bellgard
Journal:  Orphanet J Rare Dis       Date:  2017-08-01       Impact factor: 4.123

  5 in total

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