Landscape analysis of registries and biobanks: a tool for disease advocacy organizations to enhance translational research systems.

Abstract:

:Disease advocacy organizations play an increased role in the development and management of registries and biorepositories. Genetic Alliance developed criteria to assist organizations in selecting vendors and conducted a technical assessment survey of potential vendors. More than half offered customizable solutions, and biorepositories surveyed offered a variety of genomic services. Nearly three-quarters collect deidentified data, and few use controlled vocabulary, limiting the ability to recontact participants and share data. While this does not represent the complete registry and biorepository landscape, it is a starting point to assist organizations in assessing appropriate solutions.

journal_name

Biopreserv Biobank

authors

Horn EJ,Bialick JF,Terry SF

doi

10.1089/bio.2010.0007

subject

Has Abstract

pub_date

2010-06-01 00:00:00

pages

115-7

issue

2

eissn

1947-5535

issn

1947-5543

journal_volume

8

pub_type

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