Expanding the BBMRI-ERIC Directory into a Global Catalogue of COVID-19-Ready Collections: A Joint Initiative of BBMRI-ERIC and ISBER

Yoshinori Murakami,Yuichi Goto,Seiya Imoto,Makoto Hirata,Kichiya Suzuki,Fuji Nagami,Satoshi Nagaie, Yoshihiro, Miyamoto,Eisei Noiri, Ryo, Matsumura, Reiko Miyahara, Koji Kitajima,Shin Kawano, Mizuki Morita, Hiroshi Nishihara, Hiroki Nakae, Masayuki, Yoshida, Hiroko Kohbata,Manabu Muto,Shigemi Matsumoto,Johji Inazawa,Toshihiro Tanaka,Akira Takemoto, Hiroyuki, Nishiyama,Tomoyo Takeuchi,Toshihisa Takagi, Hanna Siatecka, Eunice Choi, David, Tulman, Patricia Castro

semanticscholar(2020)

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摘要
The National Cancer Institute’s (NCI) Cancer MoonshotSM Biobank (the biobank) is a 5-year effort to accelerate research on cancer drug resistance and sensitivity. To accomplish this, the biobank will coordinate the donation of biospecimens from over 1000 research participants with cancer who receive standard of care therapy at participating NCI Community Oncology Research Program (NCORP) sites. As a return of value to participants and providers, the Biobank will conduct clinical tumor biomarker testing at a CLIA-certified laboratory. Individual biomarker report results will be provided directly to participants and their providers via a secure portal hosted on the biobank website (www. moonshotbiobank.cancer.gov). The report will include information about DNA and/or RNA found in the tumor that may be relevant to treatment, as well as information on potential therapies and clinical trials. Statement of the problem: Biomarker testing has grown considerably over the last decade. Unfortunately, patients and providers often lack sufficient resources and expertise to navigate the overwhelming amount of information and technical terminology in these reports. Proposed solution: To facilitate understanding of biomarker testing and key elements of the biobank biomarker report, we worked alongside providers, patient advocates, and communications experts to create supporting informational content for the biobank website. Resources include a sample report, an accompanying plain language guide to help users navigate and understand the report, a ‘Frequently Asked Questions’ area to be continuously updated based on participant and provider feedback, general information about biomarker testing, and links to biomarker testing learning modules and other relevant topics eligible for free Continuing Medical/Nursing Education (CME/CNE) credits through an external resource. Prior to launch of the project, training sessions were held to give providers an overview of the resources described here and to answer their questions about the content. Participants and providers will be invited to provide feedback regarding the usefulness of these resources via surveys distributed throughout the life of the project. Feedback will be used to iterate on and improve content. Conclusion: Through the creation of resources that promote understanding of biomarker testing and results, the biobank aims to empower participants and providers in the use of these resources to identify individualized treatments that have the potential to improve patient outcomes.
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