Evidence map›Paper›PMID 39107697›Full record

ArticleBMC cancer2024

Setting the international research agenda for sarcomas with patients and carers: results of phase II of the Sarcoma Patient Advocacy Global Network (SPAGN) priority setting partnership.

E Roets, K Schuster, S Bickley, M Wartenberg, O Gonzato, N Fernandez, B Kasper, K Pilgermann, R Wilson, N Steeghs and 3 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in BMC cancer, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing 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

4 citing papers in PubMed.

  1. Review
  2. Article
  3. Article
  4. Review
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

13 authors.

E RoetsMedical Oncology Department, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, The Netherlands.
K SchusterSarcoma Patient Advocacy Global Network (SPAGN), Untergasse 36, D-61200, Wölfersheim, Germany.
S BickleySarcoma Patient Advocacy Global Network (SPAGN), Untergasse 36, D-61200, Wölfersheim, Germany.
M WartenbergSarcoma Patient Advocacy Global Network (SPAGN), Untergasse 36, D-61200, Wölfersheim, Germany.
O GonzatoSarcoma Patient Advocacy Global Network (SPAGN), Untergasse 36, D-61200, Wölfersheim, Germany.
N FernandezSarcoma Patient Advocacy Global Network (SPAGN), Untergasse 36, D-61200, Wölfersheim, Germany.
B KasperSarcoma Patient Advocacy Global Network (SPAGN), Untergasse 36, D-61200, Wölfersheim, Germany.
K PilgermannSarcoma Patient Advocacy Global Network (SPAGN), Untergasse 36, D-61200, Wölfersheim, Germany.
R WilsonSarcoma Patient Advocacy Global Network (SPAGN), Untergasse 36, D-61200, Wölfersheim, Germany.
N SteeghsMedical Oncology Department, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, The Netherlands.
W T A van der GraafMedical Oncology Department, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, The Netherlands.
G van OortmerssenSarcoma Patient Advocacy Global Network (SPAGN), Untergasse 36, D-61200, Wölfersheim, Germany.
O HussonMedical Oncology Department, Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, The Netherlands. o.husson@erasmusmc.nl.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundTypically, researchers and clinicians determine the agenda in sarcoma research. However, patient involvement can have a meaningful impact on research. Therefore, the Patient-Powered Research Network (PPRN) of the Sarcoma Patient Advocacy Global Network (SPAGN) set up a Priority Setting Partnership (PSP). The primary objective of this partnership is to identify priorities for research and patient advocacy topics.

methodsIn the first phase of this PSP, including 264 sarcoma patients and carers from all over the world, 23 research topics regarding sarcomas and 15 patient advocacy topics were identified using an online survey. In the second phase, participants were asked to fill in a top five and a top three of research and patient advocacy topics, respectively. Additionally, sociodemographic characteristics and sarcoma characteristics were collected. Social media channels, local national patient advocacy groups and the SPAGN website were used to distribute the survey.

resultsIn total, 671 patients (75%) and carers (25%) participated in this survey. The five highest ranked research topics were related to causes of sarcoma (43%), prognosis and risk of recurrence (40%), specific subtypes of sarcoma (33%), the role of immunotherapy, targeted therapy and combined therapy (30%), and hereditary aspects (30%). The three highest ranked patient advocacy topics were improving the diagnostic process of sarcoma (39%), access to tumor DNA analysis (37%) and establishing an international sarcoma registry (37%).

conclusionsThis sarcoma PSP has identified priorities for research and patient advocacy, offering guidance for researchers, assisting funding agencies with assessing project relevance and empowering patient advocates to represent the needs of patients and carers.

Indexed as

CaregiversPatient AdvocacySarcomaAdultAgedBiomedical ResearchFemaleHumansMaleMiddle AgedPatient ParticipationSurveys and QuestionnairesYoung AdultBone sarcomaDesmoid fibromatosisGastrointestinal stromal tumorPatient advocacyPatient involvementPriority setting partnershipSarcomaSoft tissue sarcoma

Identifiers

PMID39107697
PMCPMC11301941

What OpenQuestion holds

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Registered trials

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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.