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Last Updated: 11/04/14

Pilot Phase Products

The caHUB Administrative Working Group (AWG) included a wide range of experts and opinion leaders across relevant disciplines to produce key recommendations on the components necessary to establish caHUB. This was accomplished by formation of a series of strategic and operational subgroups that met over a period of approximately 9 months to develop recommendations, SOPs, best practices, research findings, and issues for consideration. These focused subgroups (SG) were organized as follows: Strategic Planning/Organizational Structure (SPOS), Cancer Biospecimens (CB), Acquisition of Normal Tissues (ANT), ELSI, Communications, Facilities, Informatics, and Partnerships. In addition to these subgroups, the OBBR engaged the consulting firm Booz Allen Hamilton to perform a thorough analysis of the economic considerations involved in establishing caHUB and to develop cost-recovery models for long-term sustainability.

Among the many recommendations from this group was the recommendation that caHUB evolve into a public-private partnership (PPP) as soon as practicable. One reason behind this recommendation is that a PPP is required to enable the alternative cost-recovery options needed for sustainability and as a reality of limited capacity for Federal financial support. Secondly, forming partnerships with patient advocacy groups, industry, and academia likely would enable caHUB to respond quickly to changing scientific needs and engender greater public trust.

The AWG also provided many other products to the caHUB team that might prove useful to individuals interested in developing biorepositories. These include:

  • Strategic mission and vision recommendations outlining worthy goals and an appropriate array of services of use to the research community
  • Cancer-specific acquisition SOPs (based on input from nationally recognized pathologists and surgeons, incorporating evidence-based practices when available)
  • Best practices for postmortem recovery of normal human tissue for research
  • An informed consent template document (including minimum criteria and key elements such as clear description of physical donation, potential use of contributed specimens, protection of privacy, ability to withdraw, and expectations for future interaction or benefit from donation)
  • General guidance principles surrounding the breadth of ethical, legal and social issues relevant to collection of human biospecimens (e.g. governance, intellectual property rights, return of research results, conflict of interest policy, pediatric participation, and issues related to rapid-autopsy donations)