A survey was conducted to obtain a greater understanding of the costs involved in operating a biobank. The anonymized survey data was then used to develop the BEMT, a cost modeling tool for biobanks. Users of the tool will be able to create a cost profile for their biobanks' specimens, products and services, establish pricing, and allocate costs for biospecimens based on percent cost recovered, and perform project-specific cost analyses and financial forecasting.
Background: Researchers and other key stakeholders in biobanking often do not have a thorough understanding of the true costs and challenges associated with initiating, running, and maintaining a biobank. The National Cancer Institute's Biorepositories and Biospecimen Research Branch (BBRB) commissioned the Biobanking Financial Sustainability survey to better understand the challenges that biobanks face in supporting ongoing operations. A series of interviews with biobanking managers and an international focus group session informed the content of the survey. Methods: The design of the survey included five main sections, each containing questions related to primary topics as follows: general demographics, operations, funding sources, costs, and financial challenges. While the survey focused on financial issues and challenges, it also explored staffing and strategic planning as these issues relate to the sustainability of operations and financial support. U.S. and international biobanks were included in the survey. Results: Biobanks in general are dependent on public funding and most biobanks do not have formal plans for the long-term stewardship of their collections. Respondents are working at a critical level of personnel and are not in a position to further reduce staffing. Smaller biobanks in particular need assistance in defining reasonable cost recovery user fees for biospecimens and related services. Conclusions: The survey results highlight several issues that are important for long-term biobank sustainability. It is critical to prepare for such issues as effective biobanking practices have increasingly been recognized as a key component for the advancement of precision medicine.
Patients and healthcare providers are important partners in cancer biobanking and research. Until now, however, there have been a limited number of scalable approaches to engage patients and providers as true collaborators in biobanking studies. The National Cancer Institute's Cancer Moonshot Biobank is a new engagement-centered project whose goal is to accelerate cancer research on drug resistance and sensitivity. This ambitious undertaking will involve the collection and distribution of longitudinal cancer biospecimens from over 1000 research participants receiving standard of care therapy at participating NCI Community Oncology Research Program (NCORP) institutions. Participants will be asked to donate blood and tissue at various time points including at baseline, during treatment, and at progression, if applicable. Engagement is a core component of the project given the longitudinal nature of the project, and the importance of participants and providers to its success. We define engagement as the establishment of an ongoing trusting and mutually vested relationship between study participants, healthcare providers and the Biobank. The three main engagement components of the Cancer Moonshot Biobank are: 1. External Scientific Panel (ESP): An extramural team of physicians, patient advocates, communication and biobanking experts who give input on various aspects of Biobank engagement 2. Local engagement activities at NCORP Sites 3. An online Participant and Provider Engagement (PPE) portal The PPE portal will be the main platform for direct interface between the Biobank and its participants, healthcare providers, as well as the public, and will serve as an archetype within NCI for the development of a unified portal for future NCI projects. Through the PPE portal, participants and providers will receive program updates, securely access documents including their biomarker test results and signed consent forms, and access educational material and other community resources. We describe ideation, design, and content creation for the PPE portal. Strategies for usability testing, integration of feedback, procedures for design and content iteration, as well as lessons learned are also discussed. Through the creation of NCI's PPE portal we aim to provide a valuable resource to participants and providers who are part of the Cancer Moonshot Biobank, while at the same time facilitating adoption of online engagement strategies within NCI and beyond. Citation Format: Esmeralda Casas-Silva, Helena J. Ellis, Veena Gopalakrishnan, Carol J. Weil, Abhi Rao, Lokesh Agrawal, Ping Guan, Natalie Madero, Jane W. Wanyiri, Jeffrey McLean, Mark A. Jensen, James Suh, Sean McDermott, P. Mickey Williams, Helen M. Moore, Laura Kadamus, Ainsley Adao, Rhett Beattie, Frank Ali, Debapriya Sarkar. Fostering research participation through NCI's Cancer Moonshot Biobank engagement portal [abstract]. In: Proceedings of the Annual Meeting of the American Association for Cancer Research 2020; 2020 Apr 27-28 and Jun 22-24. Philadelphia (PA): AACR; Cancer Res 2020;80(16 Suppl):Abstract nr 4352.
Improved biospecimen handling practices are increasingly important for cancer research as advanced molecular analysis becomes routine in clinical trials and more frequently available in standard of care medicine. Biospecimens and associated clinical data collected in a consistent, established fashion can greatly facilitate cancer biomarker validation and development and validation of clinical diagnostic assays. In order to establish a set of guidelines to improve the quality of biospecimen-related research, the NCI’s Biorepositories and Biospecimen Research Branch developed the NCI Best Practices for Biospecimen Resources which includes technical recommendations on biospecimen handling as well as ethical and regulatory best practices. The 3rd, 2016 revised version of these Best Practices focused on updating technical and operational best practices with recommendations based on more recent research, guidance and standards for collecting, processing and storing biospecimens; revised informatics best practices; and updated ethical, legal and policy sections describing new developments on return of research results, informed consent for genomics research, data sharing, and community engagement. These Best Practices aim to help patients by improving the reproducibility of cancer research data. The NCI Best Practices are also foundational to the NIH Precision Medicine Initiative, part of which aims to establish the world’s largest research biobank that will support studies that utilize biospecimens from a cohort of one million individuals in the United States. Citation Format: Abhi Rao, Jim Vaught, Ping Guan, Carol Weil, Helen M. Moore. The NCI Best Practices for Biospecimen Resources: 2016 revised recommendations [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2017; 2017 Apr 1-5; Washington, DC. Philadelphia (PA): AACR; Cancer Res 2017;77(13 Suppl):Abstract nr 5947. doi:10.1158/1538-7445.AM2017-5947
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