Czech registry of monoclonal gammopathies - Technical solution, data collection and visualisation

Result code in IS VaVaI

<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F61988987%3A17110%2F17%3AA1801R65" target="_blank" >RIV/61988987:17110/17:A1801R65 - isvavai.cz</a>

Alternative codes found

RIV/00216224:14110/17:00098160 RIV/00179906:_____/17:10366877 RIV/00843989:_____/17:E0106562 RIV/65269705:_____/17:00067276

Result on the web

<a href="http://dx.doi.org/10.14735/amko20172S43" target="_blank" >http://dx.doi.org/10.14735/amko20172S43</a>

DOI - Digital Object Identifier

<a href="http://dx.doi.org/10.14735/amko20172S43" target="_blank" >10.14735/amko20172S43</a>

Result language

angličtina

Original language name

Czech registry of monoclonal gammopathies - Technical solution, data collection and visualisation

Original language description

Background: The Registry of Monoclonal Gammopathies (RMG) was established by the Czech Myeloma Group in 2007. RMG is a registry designed for the collection of clinical data concerning diagnosis, treatment, treatment results and survival of patients with monoclonal gammopathies.Data on patients with monoclonal gammopathy of undetermined significance (MGUS),Waldenström macroglobulinaemia (WM), multiple myeloma (MM) or primary AL ("amyloid light-chain") amyloidosis are collected in the registry. Data: Nineteen Czech centres and four Slovak centres currently contribute to the registry. The registry currently contains records on more than 5,000 patients with MM, almost 3,000 patients with MGUS, 170 patients with WM and 26 patients with primary AL amyloidosis, i.e. more than 8,000 records on patients with monoclonal gammopathies altogether. Results: This paper describes technology employed for the collection, storage and subsequent online visualisation of data. The CLADE-IS platform is introduced as a new system for the collection and storage of data from the registry. The form structure and functions of the new system are described for all diagnoses in general; these functions facilitate data entry to the registry and minimise the error rate in data. Publicly available online visualisations of data on patients with MGUS, WM, MM or primary AL amyloidosis from all Czech or Slovak centres are introduced, together with authenticated visualisations of data on patients with MM from selected centres. Conclusion: The RMG represents a data basis that makes it possible to monitor the disease course in patients with monoclonal gammopathies on the population level.

Czech name

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Czech description

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Type

J_SC - Article in a specialist periodical, which is included in the SCOPUS database

CEP classification

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OECD FORD branch

30205 - Hematology

Project

<a href="/en/project/LO1214" target="_blank" >LO1214: Research Centre for Toxic Compounds in the Environment</a><br>

Continuities

V - Vyzkumna aktivita podporovana z jinych verejnych zdroju

Publication year

2017

Confidentiality

S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů

Name of the periodical

Klinicka Onkologie

ISSN

0862-495X

e-ISSN

—

Volume of the periodical

30

Issue of the periodical within the volume

6/2017

Country of publishing house

CZ - CZECH REPUBLIC

Number of pages

8

Pages from-to

43-50

UT code for WoS article

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EID of the result in the Scopus database

2-s2.0-85029524776