Processing of heterogeneous MS register data within the EUReMS project

ABSTRACT Objectives EUReMS (European Register for Multiple Sclerosis), a project including more than ten national and regional European MS registers, is aiming to enable analyses across European registers by joining existing, heterogeneous MS data in four different studies. Each participating register delivered productive data comprising information on socio-demography, disease course, medical exams or treatment. In terms of data quality, especially comparability and integrity, a data handling routine has been implemented using an open source ETL (extract transform load) tool (“Talend Open Studio”) to process the large amounts of heterogeneous raw data. That approach will be presented. Approach As a first step in harmonizing datasets of different registers, a basic EUReMS data structure was defined for each of the four project studies, considering all information required to answer the research questions. Through the data handling process, the data exports are going to be converted into the prior defined study data structure to facilitate comparability and data analyses across the various registers participating in one study. In regard to quality assurance the data handling process has been validated before providing data for analyses. Results The data handling process consists of five steps: Reading/Splitting, Cleaning, Mapping and Creating Study Datasets. During the first step, data is read and split into variables that are going to be used within the study datasets. The heterogeneity of the data is again noticeable in the data types of the source files, ranging from csv or Excel to Access Database. During the cleaning step, data is checked for incorrect or missing values and are, as a way of ensuring traceability, saved in specific reject files. In the mapping step, register specific variables are mapped to the defined EUReMS denotations. By that, the heterogeneous data is harmonized, disabling misinterpretation of register specific variables, often in national language or unfamiliar abbreviations. The data is merged into study datasets that are uniform in appearance for each study and are provided to the statistical department for analyses in order to gain insight on disease related questions. Conclusion The implemented process enables the transparent, standardised and reproducible handling of heterogeneous data and is the groundwork for analyses across the various MS registers. Though it is a time-consuming task at the first implementation, we have been able to harmonise the heterogeneous data successfully

Assess, compare and enhance the <i>status</i> of persons with Multiple Sclerosis (MS) in Europe: a European Register for MS

Objectives – Persons with multiple sclerosis (PwMS) experience health-related quality of life (HRQoL) problems greatly differing across Europe, and the European Union (EU) faces deep inequalities in MS management from country to country. Through the establishment of a European MS Register (EUReMS), an effective action is proposed to improve the overall knowledge on MS and support effective intervention programmes at EU and national political level. EUReMS aims to achieve consensus on its mission and vision, to define existing data providers, to develop models driving future MS health policies and research, to develop an information technology (IT) infrastructure for a data set, to develop a European shared governance and to secure providers’ data provision into EUReMS. Materials and methods – EUReMS is meant to build on a minimum set of core data from existing national and regional population-based MS registries and from PwMS’ perspectives. EUReMS’ main partner is the European MS Platform (EMSP) acting in collaboration with associated and collaborating European partners. Results – EUReMS was launched in July 2011. A Consensus Statement on purposes, vision, mission and strategies was produced in December 2011, and a comprehensive survey on existing MS data collections in Europe has been performed, and the EUReMS data mask is currently being discussed. Conclusions – EUReMS will represent a tool to provide up to date, comparable and sustainable MS data through an effective and credible register, which will encourage extensive knowledge building of MS, more equitable policies and higher standards in MS treatment and services.</br

Multiple sclerosis registries in Europe - results of a systematic survey.

Background: Identification of MS registries and databases that are currently in use in Europe as well as a detailed knowledge of their content and structure is important in order to facilitate comprehensive analysis and comparison of data. Methods: National MS registries or databases were identified by literature search, from the results of the MS Barometer 2011 and by asking 33 national MS societies. A standardized questionnaire was developed and sent to the registries' leaders, followed by telephone interviews with them. Results: Twenty registries were identified, with 13 completing the questionnaire and seven being interviewed by telephone. These registries differed widely for objectives, structure, collected data, and for patients and centres included. Despite this heterogeneity, common objectives of the registries were epidemiology (n=10), long-term therapy outcome (n=8), healthcare research (n=9) and support/basis for clinical trials (n=8). While physician-based outcome measures (EDSS) are used in all registries, data from patients' perspectives were only collected in six registries. Conclusions: The detailed information on a large number of national MS registries in Europe is a prerequisite to facilitating harmonized integration of existing data from MS registries and databases, as well as comprehensive analyses and comparison across European populations