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Genetic Alliance Registry and BioBank

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Genetic Alliance Registry and BioBank (GARB) was established in 2003, built on the first ever participant owned and managed registry and biobank which was founded in 1995. GARB arose from a collaborative effort of six disease advocacy organizations (DAO) (common and rare diseases) that were in need of a customizable, cooperative, model to store clinical data and biological samples, in order to reduce costs and increase capacity. These DAO set up a shared infrastructure, secured vendors, negotiated terms and created a standard, but customizable, protocol. In addition, Genetic Alliance created its own Institutional Review Board and it reviewed all of the template documents: membership agreements, consents, material transfer agreements, etc. We understood then, as we do now, that the act of creating a research infrastructure does not require institutional review board approval, but we wanted to validate all aspects of this novel system.

Much has changed since 2003 when this was a very innovative activity. In the intervening years, costs for storage and information technology (IT) have declined. IT is capable of much more than the rudimentary paper, and then digital, systems we built. GARB has modified its format, vendors, and offerings over the years, leading to this latest release in the spring of 2014, and anticipating a more integrated version in late 2014. But no one has to wait – the current system provides a comprehensive resource.

 

Offering for new GARB Members

GARB offers registry and biobanking services a la carte. This means that you may chose to use one or the other, or both. This document describes the biobanking option only. Please contact us for the registry options or visit this PEER page.

 

Biobanking 2018

Genetic Alliance biobanking services are offered to any nonprofit. We bargain with vendors for reduced rates for our members. We work as a cooperative – essentially sharing infrastructure, managing our own collections independently through a web online interface and adding services as the various member groups need them.

This is especially useful to advocacy organizations and also for centralized banking for long tail collections. Our vendors send kits (with everything the donor needs to make blood, buccal swab, saliva, or tissue donation easy), to participating individual donors. They also create large batches of kits for events.

 

Biobank Fees

Members will pay a one-time $500 Set up Fee in advance determined from the 1st of the month when they join the BioBank, and they will pay the Genetic Alliance IRB review fee of $500 or receive approval from another independent IRB. Members will also be charged $750/quarter billed in advance of the quarter.

 

Contact Us

We offer exceptional and cost effective biorepository services. Please contact us for updated prices, these change as vendors change their prices.

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4301 Connecticut Ave NW, Suite 404, Washington DC 20008-2369 | Tel: 202.966.5557 | Fax: 202.966.8553 | EIN 52-1571905

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