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Registry and Biorepository Bulletin
Brought to you by Genetic Alliance Registry & BioBank
28 September 2012 Issue #31


Preventing Storage Glitches

Storage glitches are catastrophic to biorepositories. Failures due to power loss, faulty technology, or natural disasters can render samples useless. The recent freezer failure at Harvard’s Brain Bank re-enforces the importance of minimizing risk. ISBER members Philip Baird and Stephen Hewitt provide guidance for minimizing risk of failure. While computer technology and software systems may be used to maintain sample databases, staff must oversee the maintenance of storage. Staff should be available 24/7 to monitor and respond to issues, and contingency plans must be in place. Training of staff on standard operating procedures and contingency plans is vital, and redundancies must be examined to minimize risk and avoid critical failure. Implementing a robust system, with routine checks by well-trained staff, will result in the safest and most secure storage.  

Common Data Elements

Common data elements (CDEs) enable data to be shared across registries. By using CDEs, registry operators can ensure that data are defined in the same way, and use the same standards and vocabularies. The Office of Rare Disease Research (ORDR), with the National Institutes of Health (NIH), has established CDEs for rare disease registries. These CDEs capture a minimum level of data needed for most rare diseases. Registry developers will need to supplement their questionnaires with additional information specific to the disease or condition of interest. There are 72 CDEs in the following categories: contact information, socio-demographic information, diagnosis, family history, anthropometric information (height and weight), patient reported outcomes, medications/devices and health services, clinical research participation and biospecimens, and administrative.

Biorepository Marketing Webinar

If you build it, they will come… This strategy may have worked for Ray Kinsella in Field of Dreams, but it will not produce a home run for biorepository managers. Many organizations spend large amounts of time, effort, and resources building their sample collections, and limited resources are spent marketing these collections to researchers. Science will not advance if biospecimen collections sit unused in the freezer. But how do you get researchers to be aware of and use your biosamples? Join us on October 11, as we ask three experts to share their experiences about marketing their collections and making samples available to researchers.

Biobank Survey Opportunity

Genetic Alliance is conducting a short, anonymous survey about biobanks. We are asking current biobank participants, and those who may be interested in participating, their experiences and opinions about biobanks and sample ownership. This survey has been approved by the Genetic Alliance Institutional Review Board #IORG0003358. These results will help build better biobanks. Take the survey and share the link with others.

SOPs for Tissue Collection

The National Cancer Institute’s (NCI) cancer human Biobank (caHUB) program has recently released Standard Operating Procedures (SOPs) to facilitate the collection of high quality biospecimens from rapid autopsies and organ donors. These SOPs address ethical and regulatory procedures, data collection, biospecimen collection and tracking, pathology review, and the production of collection and shipping kits and checklists. The SOP library provides a guidebook for other institutions and scientists, as successful collection from these sources requires adherence to complex processes.

Brochure Explains Sample Donation

The National Cancer Institute’s (NCI) Office of Biorepositories and Biospecimen Research (OBBR) has released a brochure to help donors understand sample donation. The brochure provides information on the types of samples collected, how they are collected, and how these samples may be used in research. Addressing potential donors’ concerns and explaining the process of sample donation may encourage research participation.


Edited by Jeremiah Sarella, Liz Horn, and Sharon Terry

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