title: Sample and data sharing: observations from a central data repository.
abstract: OBJECTIVE
  From 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.
  
  
  METHODS
  Effective maintenance required the system to be flexible and dynamic while at the same time compliant with established data standards.
  
  
  RESULTS
  Our 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.
  
  
  CONCLUSIONS
  The 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.
authors.affiliation: RTI International, PO Box 12194, Research Triangle Park, NC 27709, USA.
authors.forename: Mary-Anne
authors.initials: MA
authors.lastname: Ardini
authors.affiliation: RTI International, PO Box 12194, Research Triangle Park, NC 27709, USA.
authors.forename: Huaqin
authors.initials: H
authors.lastname: Pan
authors.affiliation: RTI International, PO Box 12194, Research Triangle Park, NC 27709, USA.
authors.forename: Ying
authors.initials: Y
authors.lastname: Qin
authors.affiliation: RTI International, PO Box 12194, Research Triangle Park, NC 27709, USA. Electronic address: pcc@rti.org.
authors.forename: Philip C
authors.initials: PC
authors.lastname: Cooley
mesh_terms: D018070:Biological Specimen Banks / Q000458:organization & administration*; D035843:Biomedical Research / Q000458:organization & administration*; D003201:Computers; D003299:Cooperative Behavior; D017408:Guidelines as Topic; D006801:Humans; D033181:Information Dissemination; D054586:National Institute of Diabetes and Digestive and Kidney Diseases (U.S.); D010067:Ownership; D011786:Quality Control; D012984:Software; D013048:Specimen Handling / Q000191:economics / Q000592:standards*; D014481:United States
keywords: Biobank; Clinical data repository; NIDDK