Sample and data sharing: Observations from a central data repository

• We were funded to develop the NIDDK central Repository.
• We describe the design and implementation of this Repository.
• We discovered that the design had to be flexible and compliant with data standards.
• The operation of a large repository depends on many outside parties.
• These different points of view have to be reconciled.
• We conjecture that the bio-banking industry will become focused on specific diseases.
• Emerging technologies will affect existing repository infrastructures.

ObjectivesFrom 2003 to 2013, RTI International served as the data repository for the National Institute of Diabetes, Digestive and Kidney Diseases (NIDDK). RTI worked closely with two sample repository partners to build and maintain the Central Repository (CR) that made data and samples available to approved requestors. In this paper, we recap aspects of establishing the mechanism; detail the challenges and limitations of data and sample sharing, and explore the future of resource sharing in light of the evolving environment of research funding.Design and methodsEffective maintenance required the system to be flexible and dynamic while at the same time compliant with established data standards.ResultsOur years serving as the CR for NIDDK have yielded a number of observations about the difficulties of running a repository, an operation that is by definition dependent on many outside parties whose degree of expertise and efficiency have a direct impact on repository functioning.ConclusionThe bio-banking industry will likely continue to become more globally centralized for studying specific genetic diseases and monitoring the health of our environment. The dynamic relationship between emerging technologies and the infrastructure will be needed to support future research that requires the ability of organizations providing support to remain flexible even while following established standards.