Evidence map›Paper›PMID 32410281›Full record

SynthesisBritish journal of haematology2020

Development of a core outcome set for myelodysplastic syndromes - a Delphi study from the EUMDS Registry Group.

Ursula Rochau, Igor Stojkov, Annette Conrads-Frank, Helena H Borba, Karin A Koinig, Marjan Arvandi, Corine van Marrewijk, Hege Garelius, Ulrich Germing, Argiris Symeonidis and 6 more

Abstract readSystematic Review
In one paragraph

Synthesis in British journal of haematology, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.

0numbers the graph read from it
0cells of the map it votes in
7citing papers in PubMed
–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

7 citing papers in PubMed.

  1. Trial
  2. Article
  3. Review
  4. Article
  5. Article
  6. Article
  7. 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

16 authors.

Ursula RochauDepartment of Public Health, Health Services Research and Health Technology Assessment, Institute of Public Health, Medical Decision Making and Health Technology Assessment, UMIT - University for Health Sciences, Medical Informatics and Technology, Hall i.T., Austria.ORCID 0000-0003-1077-2058
Igor StojkovDepartment of Public Health, Health Services Research and Health Technology Assessment, Institute of Public Health, Medical Decision Making and Health Technology Assessment, UMIT - University for Health Sciences, Medical Informatics and Technology, Hall i.T., Austria.
Annette Conrads-FrankDepartment of Public Health, Health Services Research and Health Technology Assessment, Institute of Public Health, Medical Decision Making and Health Technology Assessment, UMIT - University for Health Sciences, Medical Informatics and Technology, Hall i.T., Austria.
Helena H BorbaDepartment of Pharmacy, Pharmaceutical Sciences Postgraduate Research Program, Federal University of Paraná, Curitiba, Brazil.
Karin A KoinigDepartment of Internal Medicine V (Hematology and Oncology), Innsbruck Medical University, Innsbruck, Austria.ORCID 0000-0002-3659-4934
Marjan ArvandiDepartment of Public Health, Health Services Research and Health Technology Assessment, Institute of Public Health, Medical Decision Making and Health Technology Assessment, UMIT - University for Health Sciences, Medical Informatics and Technology, Hall i.T., Austria.
Corine van MarrewijkDepartment of Hematology, Radboud university medical center, Nijmegen, the Netherlands.
Hege GareliusDepartment of Medicine, Section of Hematology and Coagulation, Sahlgrenska University Hospital, Göteborg, Sweden.
Ulrich GermingDepartment of Hematology, Oncology and Clinical Immunology, Universitätsklinik Düsseldorf, Düsseldorf, Germany.
Argiris SymeonidisDepartment of Internal Medicine, Division of Hematology, University of Patras Medical School, Patras, Greece.
Guillermo F SanzDepartment of Hematology, Hospital Universitario y Politécnico La Fe, Valencia, Spain.
Pierre FenauxService d'Hématologie, Hôpital Saint-Louis, Assistance Publique des Hôpitaux de Paris (AP-HP) and Université Paris 7, Paris, France.ORCID 0000-0002-0468-3553
Theo de WitteDepartment of Tumor Immunology - Nijmegen Center for Molecular Life Sciences, Radboud university medical center, Nijmegen, the Netherlands.
Fabio EfficaceHealth Outcomes Research Unit, Gruppo Italiano Malattie Ematologiche dell'Adulto (GIMEMA), Rome, Italy.
Uwe SiebertDepartment of Public Health, Health Services Research and Health Technology Assessment, Institute of Public Health, Medical Decision Making and Health Technology Assessment, UMIT - University for Health Sciences, Medical Informatics and Technology, Hall i.T., Austria.ORCID 0000-0001-6425-7671
Reinhard StauderDepartment of Internal Medicine V (Hematology and Oncology), Innsbruck Medical University, Innsbruck, Austria.ORCID 0000-0002-8993-9561

Funding

Amgen LimitedAustrian Science Fund within ERA NetS I 1576Celgene InternationalEuropean Union's Horizon 2020 research and innovation programme 634789Novartis Pharmacy B.V. Oncology Europethe European CommissionVerein Senioren-Krebshilfe
6 · The paper itself

Abstract

Treatment options for myelodysplastic syndromes (MDS) vary widely, depending on the natural disease course and patient-related factors. Comparison of treatment effectiveness is challenging as different endpoints have been included in clinical trials and outcome reporting. Our goal was to develop the first MDS core outcome set (MDS-COS) defining a minimum set of outcomes that should be reported in future clinical studies. We performed a comprehensive systematic literature review among MDS studies to extract patient- and/or clinically relevant outcomes. Clinical experts from the European LeukemiaNet MDS (EUMDS) identified 26 potential MDS core outcomes and participated in a three-round Delphi survey. After the first survey (56 experts), 15 outcomes met the inclusion criteria and one additional outcome was included. The second round (38 experts) resulted in six included outcomes. In the third round, a final check on plausibility and practicality of the six included outcomes and their definitions was performed. The final MDS-COS includes: health-related quality of life, treatment-related mortality, overall survival, performance status, safety, and haematological improvement. This newly developed MDS-COS represents the first minimum set of outcomes aiming to enhance comparability across future MDS studies and facilitate a better understanding of treatment effectiveness.

Indexed as

Combined Modality TherapyDelphi TechniqueDisease ManagementHumansMyelodysplastic SyndromesOutcome Assessment, Health CarePatient Reported Outcome MeasuresQuality of LifeRegistriesSurveys and Questionnairesclinical trialcore outcome set (COS)Delphi surveymyelodysplastic syndromes (MDS)outcome study

Identifiers

PMID32410281
PMCPMC8221029

What OpenQuestion holds

Textmetadata
LicenceCC BY
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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.