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

Kód výsledku v 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>

Nalezeny alternativní kódy

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

Výsledek na webu

<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>

Jazyk výsledku

angličtina

Název v původním jazyce

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

Popis výsledku v původním jazyce

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.

Název v anglickém jazyce

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

Popis výsledku anglicky

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.

Druh

J_SC - Článek v periodiku v databázi SCOPUS

CEP obor

—

OECD FORD obor

30205 - Hematology

Projekt

<a href="/cs/project/LO1214" target="_blank" >LO1214: Centrum pro výzkum toxických látek v prostředí</a><br>

Návaznosti

V - Vyzkumna aktivita podporovana z jinych verejnych zdroju

Rok uplatnění

2017

Kód důvěrnosti údajů

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

Název periodika

Klinicka Onkologie

ISSN

0862-495X

e-ISSN

—

Svazek periodika

30

Číslo periodika v rámci svazku

6/2017

Stát vydavatele periodika

CZ - Česká republika

Počet stran výsledku

8

Strana od-do

43-50

Kód UT WoS článku

—

EID výsledku v databázi Scopus

2-s2.0-85029524776