Setting the international research agenda for sarcoma together with patients and carers: first results of the Sarcoma Patient EuroNet (SPAEN) priority setting partnership

Husson, Olga; Drabbe, Cas; Schuster, Kathrin; Kampen, P. van; Koops, C.; Weidema, Marije E.; Davidson, R.; Wartenberg, Markus; Artzner, E.; Gonzato, Ornella; Fernandez, Nicolas; Kasper, Bernd; Pilgermann, K.; Wilson, Roger; Graaf, Winette T.A. van der; Oortmerssen, G. van

doi:10.1016/j.esmoop.2022.100509

Cited by 7 publications

(4 citation statements)

References 29 publications

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“…There is also a growth of evidence-based advocacy, which can bring patient-led data to the fore in decision processes and policy-making. A strong example is seen in the work of SPAGN and the Netherlands Cancer Institute on the PPRN Priority Setting Partnership [33].…”

Section: Recommendationmentioning

confidence: 99%

What Is a Sarcoma ‘Specialist Center’? Multidisciplinary Research Finds an Answer

Wilson,

Reinke,

van Oortmerssen

et al. 2024

Cancers

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The management of sarcomas in specialist centers delivers significant benefits. In much of the world, specialists are not available, and the development of expertise is identified as a major need. However, the terms ‘specialist’ or ‘expert’ center are rarely defined. Our objective is to offer a definition for patient advocates and a tool for healthcare providers to underpin improving the care of people with sarcoma. SPAGN developed a discussion paper for a workshop at the SPAGN 2023 Conference, attended by 75 delegates. A presentation to the Connective Tissue Oncology Society (CTOS) and further discussion led to this paper. Core Principles were identified that underlie specialist sarcoma care. The primary Principle is the multi-disciplinary team discussing every patient, at first diagnosis and during treatment. Principles for optimal sarcoma management include accurate diagnosis followed by safe, high-quality treatment, with curative intent. These Principles are supplemented by Features describing areas of healthcare, professional involvement, and service provision and identifying further research and development needs. These allow for variations because of national or local policies and budgets. We propose the term ‘Sarcoma Intelligent Specialist Network’ to recognize expertise wherever it is found in the world. This provides a base for further discussion and local refinement.

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Section: Recommendationmentioning

confidence: 99%

What Is a Sarcoma ‘Specialist Center’? Multidisciplinary Research Finds an Answer

Wilson,

Reinke,

van Oortmerssen

et al. 2024

Cancers

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“…Moreover, RWD can serve to delve deeper into understanding the underlying causes of sarcomas, a matter of utmost significance for patients. 33…”

Section: Diagnostic Phasementioning

confidence: 99%

“…53 Thus, it is crucial to involve patients in various research phases (eg, through patient vignettes) and it has been shown that patients with sarcoma and carers are eager to do so. 33 Because conventional observational studies lack random assignment to control for confounding variables, Bayesian networks could provide a solution, enabling outcome prediction in RCTs using RWD to estimate treatment effects and causal relationships (Table 2). 54 Furthermore, in URS, where sample sizes are often limited, data augmentation can be used to generate synthetic data derived from actual patient data.…”

Section: Treatment Phasementioning

confidence: 99%

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Improving Diagnosis and Care for Patients With Sarcoma: Do Real-World General Practitioners Data and Prospective Data Collections Have a Place Next to Clinical Trials?

Holthuis,

Heins,

van Houdt

et al. 2024

JCO Clin Cancer Inform

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There has been growing interest in the use of real-world data (RWD) to address clinically and policy-relevant (research) questions that cannot be answered with data from randomized controlled trials (RCTs) alone. This is, for example, the case in rare malignancies such as sarcomas as limited patient numbers pose challenges in conducting RCTs within feasible timeliness, a manageable number of collaborators, and statistical power. This narrative review explores the potential of RWD to generate real-world evidence (RWE) in sarcoma research, elucidating its application across different phases of the patient journey, from prediagnosis to the follow-up/survivorship phase. For instance, examining electronic health records (EHRs) from general practitioners (GPs) enables the exploration of consultation frequency and presenting symptoms in primary care before a sarcoma diagnosis. In addition, alternative study designs that integrate RWD with well-designed observational RCTs may offer relevant information on the effectiveness of clinical treatments. As, especially in cases of ultrarare sarcomas, it can be an extreme challenge to perform well-powered randomized prospective studies. Therefore, it is crucial to support the adaptation of novel study designs. Regarding the follow-up/survivorship phase, examining EHR from primary and secondary care can provide valuable insights into identifying the short- and long-term effects of treatment over an extended follow-up period. The utilization of RWD also comes with several challenges, including issues related to data quality and privacy, as described in this study. Notwithstanding these challenges, this study underscores the potential of RWD to bridge, at least partially, gaps between evidence and practice and holds promise in contributing to the improvement of sarcoma care.

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The active involvement of patients in oncology research

Ganz-Blaettler,

Liptrott,

Tolotti

et al. 2024

Cancer Treatment Reviews

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Setting the international research agenda for sarcoma together with patients and carers: first results of the Sarcoma Patient EuroNet (SPAEN) priority setting partnership

Cited by 7 publications

References 29 publications

What Is a Sarcoma ‘Specialist Center’? Multidisciplinary Research Finds an Answer

What Is a Sarcoma ‘Specialist Center’? Multidisciplinary Research Finds an Answer

Improving Diagnosis and Care for Patients With Sarcoma: Do Real-World General Practitioners Data and Prospective Data Collections Have a Place Next to Clinical Trials?

The active involvement of patients in oncology research

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