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Registry and Biorepository Bulletin
Brought to you by Genetic Alliance Registry & BioBank
23 March 2012 Issue #25


CFIDS Research Institute Without Walls

The CFIDS Association of America is building a research institute without walls (RIWW). The center of the RIWW is the SolveCFS BioBank, which has enrolled more than 450 participants to date. All projects of the RIWW involve the SolveCFS BioBank and focus on advancing effective treatments for chronic fatigue syndrome (CFS), including the need for better ways to diagnose and subtype CFS. One project involves drug repurposing, where a medication approved for one indication is tested on another condition. This work is made possible by the efforts of the CFIDS Association of America. CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) is a complex and debilitating chronic illness affecting multiple organ systems, including the brain.

People Matter – The Future of Research

Biobanks and other clinical data repositories have changed "business as usual" for researchers and for research oversight. Watch People Matter – The Future of Research to understand how important samples are to advancing the research enterprise. The video explores the challenges associated with sample collection, including the timing of consent, the sharing of information, and secondary uses of samples. The video also highlights the importance of expressing gratitude to sample contributors and engaging the public in research. And at the core, people are important. Healthcare will not advance without the involvement of research participants. People matter!

Returning Results and Incidental Findings

A recent consensus statement in Genetics and Medicine discusses returning individual research results (IRRs) and incidental findings (IFs) within the context of the biobank research system (primary research or collection sites, the biobank itself, and secondary research sites). A multidisciplinary team of authors, led by Susan Wolf, JD, suggests that the biobank itself should shoulder significant responsibility in the process. When re-identification is possible, the authors recommend that biobanks work to: (1) clarify the criteria for evaluating findings and the roster of returnable findings, (2) analyze a particular finding in relation to this, (3) reidentify the individual contributor, and (4) recontact the contributor to offer the finding. The authors also offer 10 recommendations for new and existing biobanks.

Read the Nature commentary.

BRN Symposium Archived

The 5th Annual Biospecimen Research Network (BRN) Symposium 2012 meeting was held February 22-23, in Bethesda, MD. If you were unable to attend or would like to revisit the presentations, video and slides from the symposium are archived online. The archive includes a number of presentations on cutting-edge biospecimen science, including Dr. Gene N. Herbek’s keynote address, Pathologist Leadership in Quality Initiatives for Cancer and Biorepositories.

Upcoming Meetings

The NIH Biospecimens Interest Group will meet on March 27 at 1:00 PM EST in the Lipsett Amphitheater, Building 10 (NIH Clinical Center). This session will focus on Informed Consent for Pediatric Biobanking. Presentations include: 1) Risks and the Need for Consent/Permission, 2) Pediatric Biospecimens and Informed Consent when Children Reach Adulthood: Preferences and Practices, and 3) Consent from Pediatric Biospecimen Donors at the Age of Majority: A Framework for Decision-Making. The presentation will be broadcast live.

ISBER (International Society for Biological and Environmental Repositories) 2012 Annual Meeting will be held May 15-18, in Vancouver, BC.


Edited by Liz Horn and Sharon Terry.

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