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. 2022 Nov;69(11):e29924.
doi: 10.1002/pbc.29924. Epub 2022 Aug 15.

Creating a data commons: The INternational Soft Tissue SaRcoma ConsorTium (INSTRuCT)

Kirk D Wyatt  1 , Suzi Birz  2 , Douglas S Hawkins  3 , Veronique Minard-Colin  4 , David A Rodeberg  5 , Monika Sparber-Sauer  6   7 , Gianni Bisogno  8 , Ewa Koscielniak  6   7 , Gian Luca De Salvo  9 , Martin Ebinger  10 , Johannes H M Merks  11 , Suzanne L Wolden  12 , Wei Xue  13 , Samuel L Volchenboum  2 ; INternational Soft Tissue SaRcoma ConsorTium (INSTRuCT)  1
Affiliations

Creating a data commons: The INternational Soft Tissue SaRcoma ConsorTium (INSTRuCT)

Kirk D Wyatt et al. Pediatr Blood Cancer. 2022 Nov.

Abstract

In this article, we will discuss the genesis, evolution, and progress of the INternational Soft Tissue SaRcoma ConsorTium (INSTRuCT), which aims to foster international research and collaboration focused on pediatric soft tissue sarcoma. We will begin by highlighting the current state of clinical research for pediatric soft tissue sarcomas, including rhabdomyosarcoma and non-rhabdomyosarcoma soft tissue sarcoma. We will then explore challenges and research priorities, describe the development of INSTRuCT, and discuss how the consortium aims to address key research priorities.

Keywords: data aggregation; pediatrics; sarcoma.

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Conflict of interest statement

Conflict of Interest Statement

Monika Sparber-Sauer reports participation in advisory boards related to hemophilia treatments with Sobi and Roche and will receive honorarium from Bayer for work on infantile fibrosarcoma. The remaining authors declare no conflict of interest.

Figures

Figure 1.
Figure 1.
Summary of formation of INSTRuCT
Figure 2.
Figure 2.
Relationship between data contributors, consortia, service provider and data users. Reproduced with author permission (original figure published under Creative Commons Attribution Non-Commercial No Derivatives 4.0 License.)
Figure 3.
Figure 3.
New PCDC cohort explorer
See this image and copyright information in PMC

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