Literature DB >> 27169850

[What can and cannot be achieved by registries : Perspective of the registry working group of the German Network of Health Services Research].

E A M Neugebauer1,2, J Stausberg3.   

Abstract

In addition to clinical trials, registries and cohort studies are the fundamental basis of patient-orientated research. The importance of registries is increasing because more questions involving patient care under routine conditions (real world data) need to be answered. This article supplies answers to the questions: what can be achieved with registries and what are the limitations? Starting with a consensus definition of a registry from the German Network of Health Services Research (DNVF), the question of existing registries was examined and it was concluded that there was a lack of transparency. Consequently, a registry of registries similar to clinical trials registries is urgently needed as well as an evaluation of the quality of existing registries. Criteria are deduced that allow an assessment of the quality of a registry and which comprehensive possibilities registries can provide are discussed in eight different areas of interest to clinicians. The limitations of registries compared to randomized clinical trials and cohort studies are emphasized and discussed in this article. In the future, the use of registry-based randomized clinical trials (RRCT) will allow data related to efficacy as well as to effectiveness to be collated.

Entities:  

Keywords:  Definition of registries; Limitations; Possibilities; Registry quality; Registry research

Mesh:

Year:  2016        PMID: 27169850     DOI: 10.1007/s00113-016-0176-2

Source DB:  PubMed          Journal:  Unfallchirurg        ISSN: 0177-5537            Impact factor:   1.000


  17 in total

Review 1.  Defining and improving data quality in medical registries: a literature review, case study, and generic framework.

Authors:  Danielle G T Arts; Nicolette F De Keizer; Gert-Jan Scheffer
Journal:  J Am Med Inform Assoc       Date:  2002 Nov-Dec       Impact factor: 4.497

2.  [Types of medical registries - definitions, methodological aspects and quality of the scientific work with registries].

Authors:  Stefan Mathis-Edenhofer; Brigitte Piso
Journal:  Wien Med Wochenschr       Date:  2011-12

3.  [Memorandum III: Methods for Health Services Research (Part 2)].

Authors:  E A M Neugebauer; A Icks; M Schrappe
Journal:  Gesundheitswesen       Date:  2010-09-23

Review 4.  Registries of implantable medical devices in Europe.

Authors:  Charlotte Niederländer; Philip Wahlster; Christine Kriza; Peter Kolominsky-Rabas
Journal:  Health Policy       Date:  2013-09-04       Impact factor: 2.980

Review 5.  [Minimum thresholds under scrutiny].

Authors:  D Pieper; M Eikermann; T Mathes; B Prediger; E A M Neugebauer
Journal:  Chirurg       Date:  2014-02       Impact factor: 0.955

6.  Registries for robust evidence.

Authors:  Nancy A Dreyer; Sarah Garner
Journal:  JAMA       Date:  2009-08-19       Impact factor: 56.272

7.  Identifying and improving unreliable items in registries through data auditing.

Authors:  Cameron D Willis; Damien J Jolley; John J McNeil; Peter A Cameron; Louise E Phillips
Journal:  Int J Qual Health Care       Date:  2011-03-25       Impact factor: 2.038

8.  Thrombus Aspiration in ST-Elevation myocardial infarction in Scandinavia (TASTE trial). A multicenter, prospective, randomized, controlled clinical registry trial based on the Swedish angiography and angioplasty registry (SCAAR) platform. Study design and rationale.

Authors:  Ole Fröbert; Bo Lagerqvist; Thórarinn Gudnason; Leif Thuesen; Roger Svensson; Göran K Olivecrona; Stefan K James
Journal:  Am Heart J       Date:  2010-12       Impact factor: 4.749

9.  Valid comparisons and decisions based on clinical registers and population based cohort studies: assessing the accuracy, completeness and epidemiological relevance of a breast cancer query database.

Authors:  Christian Olaf Jacke; Mathias Kalder; Uwe Wagner; Ute-Susann Albert
Journal:  BMC Res Notes       Date:  2012-12-27

10.  Registries: what level of evidence do they provide?

Authors:  Jan-Paul W R Roovers
Journal:  Int Urogynecol J Pelvic Floor Dysfunct       Date:  2007-08-03
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  7 in total

1.  ["Everyone talks about quality …"].

Authors:  H Trentzsch; G Matthes; W Mutschler
Journal:  Unfallchirurg       Date:  2018-10       Impact factor: 1.000

2.  [Results from the German shoulder- and elbow arthroplasty register (SEPR) : Anatomic or reverse shoulder arthroplasty in B2-glenoids?]

Authors:  P Magosch; P Habermeyer; S Lichtenberg; M Tauber; F Gohlke; F Mauch; D Boehm; M Loew; F Zeifang; W Pötzl
Journal:  Orthopade       Date:  2017-12       Impact factor: 1.087

Review 3.  [Registry-based research in ophthalmology].

Authors:  J Li; C Heinz; R P Finger
Journal:  Ophthalmologe       Date:  2018-10       Impact factor: 1.059

4.  [Status and perspectives of registry-based studies in German ophthalmology].

Authors:  M Roth; C Holtmann; D Böhringer; R P Finger; N Eter; B Seitz; G Geerling
Journal:  Ophthalmologe       Date:  2020-01       Impact factor: 1.059

Review 5.  [Data content of the TraumaRegister DGU® : Results of a random sample control].

Authors:  T Ziprian; F Laue; N Ramadanov; U Nienaber; R Volland; R Lefering; G Matthes
Journal:  Unfallchirurg       Date:  2018-10       Impact factor: 1.000

6.  [AKTIN - The German Emergency Department Data Registry - real-time data from emergency medicine : Implementation and first results from 15 emergency departments with focus on Federal Joint Committee's guidelines on acuity assessment].

Authors:  D Brammen; F Greiner; M Kulla; R Otto; W Schirrmeister; S Thun; S E Drösler; J Pollmanns; S C Semler; R Lefering; V S Thiemann; R W Majeed; K U Heitmann; R Röhrig; F Walcher
Journal:  Med Klin Intensivmed Notfmed       Date:  2020-12-21       Impact factor: 0.840

7.  [The Hamburg register for intravitreal injection therapies (QIVOM)].

Authors:  Christian Wolfram; Marc Schargus
Journal:  Ophthalmologe       Date:  2021-08-20       Impact factor: 1.059

  7 in total

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