Evidence map›Paper›PMID 38140852›Full record

ArticleMultiple sclerosis (Houndmills, Basingstoke, England)2024

Introducing a core dataset for real-world data in multiple sclerosis registries and cohorts: Recommendations from a global task force.

Tina Parciak, Lotte Geys, Anne Helme, Ingrid van der Mei, Jan Hillert, Hollie Schmidt, Amber Salter, Magd Zakaria, Rodden Middleton, Alexander Stahmann and 11 more

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PubMed Full text at PMC Publisher
In one paragraph

Article in Multiple sclerosis (Houndmills, Basingstoke, England), 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed, 1 pooled it
–field-weighted citation impact
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, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
  3. Article
  4. Review
  5. Article
  6. Article
  7. Article
  8. Article
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

21 authors.

Tina ParciakUniversity MS Center (UMSC), Hasselt-Pelt, Belgium.
Lotte GeysUniversity MS Center (UMSC), Hasselt-Pelt, Belgium.
Anne HelmeMultiple Sclerosis International Federation, London, UK.
Ingrid van der MeiMenzies Institute for Medical Research, University of Tasmania, The Australian MS longitudinal study (AMSLS), Hobart, TAS, Australia.
Jan HillertDepartment of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden.ORCID 0000-0002-7386-6732
Hollie SchmidtAccelerated Cure Project, iConquerMS People-Powered Research Network, Waltham, MA, USA.
Amber SalterSection on Statistical Planning and Analysis, UT Southwestern Medical Center, NARCOMS Registry, COViMS Registry, Dallas, TX, USA.ORCID 0000-0002-1088-110X
Magd ZakariaDepartment of Neurology, Ain Shams University, Cairo, Egypt.
Rodden MiddletonPopulation Data Science, Swansea University Medical School, Swansea, UK.ORCID 0000-0002-2130-4420
Alexander StahmannGerman MS Register by the German MS Society, MS Research and Project Development gGmbH (MSFP), Hanover, Germany.ORCID 0000-0001-5308-105X
Pamela DobayBiogen, Baar, Switzerland.
Elena Hernandez Martinez-LapiscinaOffice of Therapies for Neurological and Psychiatric Disorders (H-NEU), Human Medicines (H-Division), European Medicines Agency, Amsterdam, The Netherlands.
Pietro IaffaldanoDepartment of Translational Biomedicine and Neurosciences (DiBraiN), Università degli Studi di Bari Aldo Moro, Italian MS registry, Bari, Italy.ORCID 0000-0003-2308-1731
Kelly PlueschkeData Analytics and Methods Task Force, European Medicines Agency, Amsterdam, The Netherlands.
Juan I RojasNeurology Department, Hospital Universitario de CEMIC, RelevarEM, Buenos Aires, Argentina.
Meritxell SabidóDepartment of Epidemiology, Merck Healthcare KGaA, Darmstadt, Germany.
Melinda MagyariDanish Multiple Sclerosis Registry and Danish Multiple Sclerosis Center, Department of Neurology, Copenhagen University Hospital - Rigshospitalet, Glostrup, Denmark.
Anneke van der WaltDepartment of Neuroscience, Central Clinical School, Monash University, Melbourne, VIC, Australia.ORCID 0000-0002-4278-7003
Francis ArickxNational Institute for Health and Disability Insurance, Brussels, Belgium.
Giancarlo ComiDepartment of Rehabilitation Neurosciences, Casa di Cura Igea, Milan, Italy.ORCID 0000-0002-6989-1054
Liesbet M PeetersUniversity MS Center (UMSC), Hasselt-Pelt, Belgium.ORCID 0000-0002-6066-3899

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundAs of September 2022, there was no globally recommended set of core data elements for use in multiple sclerosis (MS) healthcare and research. As a result, data harmonisation across observational data sources and scientific collaboration is limited.

objectivesTo define and agree upon a core dataset for real-world data (RWD) in MS from observational registries and cohorts.

methodsA three-phase process approach was conducted combining a landscaping exercise with dedicated discussions within a global multi-stakeholder task force consisting of 20 experts in the field of MS and its RWD to define the Core Dataset.

resultsA core dataset for MS consisting of 44 variables in eight categories was translated into a data dictionary that has been published and disseminated for emerging and existing registries and cohorts to use. Categories include variables on demographics and comorbidities (patient-specific data), disease history, disease status, relapses, magnetic resonance imaging (MRI) and treatment data (disease-specific data).

conclusionThe MS Data Alliance Core Dataset guides emerging registries in their dataset definitions and speeds up and supports harmonisation across registries and initiatives. The straight-forward, time-efficient process using a dedicated global multi-stakeholder task force has proven to be effective to define a concise core dataset.

Indexed as

Multiple SclerosisHumansRegistriesCore datasetdatabaseharmonisationmultiple sclerosisreal-world dataregistry

Identifiers

PMID38140852
PMCPMC10935622

What OpenQuestion holds

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LicenceCC BY-NC
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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.