Evidence map›Paper›PMID 35035297›Full record

ArticleInternational journal of MS care

The Multiple Sclerosis Data Alliance Catalogue: Enabling Web-Based Discovery of Metadata from Real-World Multiple Sclerosis Data Sources.

Lotte Geys, Tina Parciak, Ashkan Pirmani, Robert McBurney, Hollie Schmidt, Tanja Malbaša, Tjalf Ziemssen, Arnfin Bergmann, Juan I Rojas, Edgardo Cristiano and 34 more

Open access · diamondAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in International journal of MS care. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed
1.1field-weighted citation impact, top 23% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

8 citing papers in PubMed, 11 citations in OpenAlex.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

44 authors at 20 institutions in 17 countries.

Lotte GeysUniversity MS Center, Hasselt-Pelt, Belgium (LG, TParciak, AP, BVW, LMP).ORCID https://orcid.org/0000-0003-1919-9366
Tina ParciakUniversity MS Center, Hasselt-Pelt, Belgium (LG, TParciak, AP, BVW, LMP).
Ashkan PirmaniUniversity MS Center, Hasselt-Pelt, Belgium (LG, TParciak, AP, BVW, LMP).ORCID https://orcid.org/0000-0003-4549-1002
Robert McBurneyAccelerated Cure Project for MS, Waltham, MA, USA (RM, HS).ORCID https://orcid.org/0000-0003-1747-1004
Hollie SchmidtAccelerated Cure Project for MS, Waltham, MA, USA (RM, HS).ORCID https://orcid.org/0000-0003-4467-7374
Tanja MalbašaAssociation of Multiple Sclerosis Societies of Croatia, Zagreb (TM).
Tjalf ZiemssenCenter for Clinical Neuroscience, University Hospital Dresden, Germany (TZ).ORCID https://orcid.org/0000-0001-8799-8202
Arnfin BergmannNeuroTransData Study Group, Neuburg/Donau, Germany (AB).
Juan I RojasNeurology Department, Hospital Universitario de CEMIC, Buenos Aires, Argentina (JIR).
Edgardo CristianoMS Center of Buenos Aires (CEMBA), Argentina (EC).
Juan Antonio García-MerinoDepartment of Neurology, Universidad Autonoma de Madrid, Spain (JAG-M).
Óscar FernándezUniversity of Malaga, Department of Pharmacology, Spain (OF).
Jens KuhleNeurologic Clinic and Policlinic, MS Center and Research Center for Clinical Neuroimmunology and Neuroscience Basel (RC2NB), University Hospital Basel, University of Basel, Basel, Switzerland (JK).
Claudio GobbiMultiple Sclerosis Center, Department of Neurology, Neurocenter of Southern Switzerland, Lugano, Switzerland (CG).
Amber DelmasLife Sciences Department, EHealthLine.com, Inc (AD).
Steve Simpson-YapNeuroepidemiology Unit, Melbourne School of Population and Global Health, The University of Melbourne, Australia (SS-Y, NN).
Nupur NagNeuroepidemiology Unit, Melbourne School of Population and Global Health, The University of Melbourne, Australia (SS-Y, NN).ORCID https://orcid.org/0000-0002-0271-0781
Bassem YamoutMultiple Sclerosis Center, American University of Beirut Medical Center, Lebanon (BY).
Nina SteinemannData Center of the Swiss Multiple Sclerosis Registry, Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Switzerland (NS).
Pierrette SeeldrayersDepartment of Neurology, CHU de Charleroi, Charleroi, Belgium (PS).
Bénédicte DuboisDepartment of Neurosciences, Laboratory for Neuroimmunology, KU Leuven, Leuven, Belgium (BD).ORCID https://orcid.org/0000-0003-0604-8702
Ingrid van der MeiMenzies Institute for Medical Research, University of Tasmania, Hobart TAS, Australia (IvdM).ORCID https://orcid.org/0000-0001-9009-7472
Alexander StahmannGerman MS-Registry, MS Forschungs- und Projektentwicklungs-gGmbH, Hannover, Germany (AS).
Jelena DrulovicClinic of Neurology, Clinical Center of Serbia, Belgrade, Serbia (JD).
Tatjana PekmezovicInstitute of Epidemiology, Faculty of Medicine, University of Belgrade, Belgrade, Serbia (TPekmezovic).
Waldemar BrolaCollegium Medicum, Jan Kochanowski University, Kielce, Poland (WB).ORCID https://orcid.org/0000-0002-7955-3454
Mar TintoreCentre d'Esclerosi Múltiple de Catalunya (Cemcat), Edifici Cemcat, Hospital Universitari Vall d'Hebron, Barcelona, Spain (MT).ORCID https://orcid.org/0000-0001-9999-5359
Nynke KalkersDepartment of Neurology, OLVG, and Department of Neurology, Amsterdam UMC, Location VUMC, Amsterdam, the Netherlands (NK).ORCID https://orcid.org/0000-0001-6420-7914
Rumen IvanovPMA - Pharma Marketing Advisors, Ltd, Sofia, Bulgaria (RI).
Magd ZakariaDepartment of Neurology, Ain Shams University, Egypt (MZ).
Maged Abdel NaseerDepartment of Neurology, Cairo University, Egypt (MAN).
Wim Van Heckeicometrix, Leuven, Belgium (WVH).ORCID https://orcid.org/0000-0002-3058-0937
Nikolaos GrigoriadisSecond Neurological University Department, Multiple Sclerosis Center, Aristotle University of Thessaloniki, AHEPA General University Hospital, Thessaloniki Greece (NG, MB).ORCID https://orcid.org/0000-0002-4278-3301
Marina BozikiSecond Neurological University Department, Multiple Sclerosis Center, Aristotle University of Thessaloniki, AHEPA General University Hospital, Thessaloniki Greece (NG, MB).ORCID https://orcid.org/0000-0002-6601-5163
Adriana CarraMS Center Hospital Britanico, Buenos Aires, Argentina (AC).ORCID https://orcid.org/0000-0003-3874-4884
Mikolaj A PawlakDepartment of Neurology and Cerebrovascular Disorders, Poznan University of Medical Sciences, Poznan, Poland (MAP).ORCID https://orcid.org/0000-0002-8607-0194
Ruth DobsonWolfson Institute of Preventive Medicine, Charterhouse Square, London, UK (RD).
Kerstin HellwigDepartment of Neurology, Katholisches Klinikum, St Josef Hospital, Ruhr University Bochum, Bochum Germany (KH).ORCID https://orcid.org/0000-0003-4467-9011
Arlene GallagherClinical Practice Research Datalink (CPRD), Medicines and Healthcare Products Regulatory Agency (MHRA), London, UK (AG).
Letizia LeocaniClinical Neurology Unit, San Raffaele University, Milan, Italy (LL, GDC).
Gloria Dalla CostaHospital Universitário Getulio Vargas, Manaus/Amazonas, Brazil (NAdCS).
Nise Alessandra de Carvalho SousaREDONE - Brazilian Registry of Multiple Sclerosis and Neuromyelitis Optica Spectrum Disorders, São Paulo, Brazil (NAdCS).
Bart Van WijmeerschUniversity MS Center, Hasselt-Pelt, Belgium (LG, TParciak, AP, BVW, LMP).
Liesbet M PeetersUniversity MS Center, Hasselt-Pelt, Belgium (LG, TParciak, AP, BVW, LMP).ORCID https://orcid.org/0000-0002-6066-3899
Hasselt University · BEAccelerated Cure Project for Multiple Sclerosis · USAristotle University of Thessaloniki · GRThe University of Melbourne · AUAin Shams University · EGAmerican University of Beirut Medical Center · LBAmsterdam University Medical Centers · NLCairo University · EGCentar za Promociju Nauke · RSCentre d'Esclerosi Múltiple de Catalunya · ESClinical Practice Research Datalink · GBFundação Getulio Vargas · BRGrand Charleroi Hospital · BEHospital Británico de Buenos Aires · ARHospital Universitario Austral · ARHospital Universitario Puerta de Hierro Majadahonda · ESIcometrix (Belgium) · BEJan Kochanowski University · PLLaboratory for Biomedical Neurosciences · CHLifeline Hospital · IN

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundOne of the major objectives of the Multiple Sclerosis Data Alliance (MSDA) is to enable better discovery of multiple sclerosis (MS) real-world data (RWD).

methodsWe implemented the MSDA Catalogue, which is available worldwide. The current version of the MSDA Catalogue collects descriptive information on governance, purpose, inclusion criteria, procedures for data quality control, and how and which data are collected, including the use of e-health technologies and data on collection of COVID-19 variables. The current cataloguing procedure is performed in several manual steps, securing an effective catalogue.

resultsHerein we summarize the status of the MSDA Catalogue as of January 6, 2021. To date, 38 data sources across five continents are included in the MSDA Catalogue. These data sources differ in purpose, maturity, and variables collected, but this landscaping effort shows that there is substantial alignment on some domains. The MSDA Catalogue shows that personal data and basic disease data are the most collected categories of variables, whereas data on fatigue measurements and cognition scales are the least collected in MS registries/cohorts.

conclusionsThe Web-based MSDA Catalogue provides strategic overview and allows authorized end users to browse metadata profiles of data cohorts and data sources. There are many existing and arising RWD sources in MS. Detailed cataloguing of MS RWD is a first and useful step toward reducing the time needed to discover MS RWD sets and promoting collaboration.

Indexed as

CatalogMultiple sclerosis (MS)Real-world dataRegistry

Identifiers

PMID35035297
PMCPMC8745233
OpenAlexW4200099255

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.