Can data repositories help find effective treatments for complex diseases?

Prog Neurobiol. 2017 May:152:200-212. doi: 10.1016/j.pneurobio.2016.03.008. Epub 2016 Mar 24.


There are many challenges to developing treatments for complex diseases. This review explores the question of whether it is possible to imagine a data repository that would increase the pace of understanding complex diseases sufficiently well to facilitate the development of effective treatments. First, consideration is given to the amount of data that might be needed for such a data repository and whether the existing data storage infrastructure is enough. Several successful data repositories are then examined to see if they have common characteristics. An area of science where unsuccessful attempts to develop a data infrastructure is then described to see what lessons could be learned for a data repository devoted to complex disease. Then, a variety of issues related to sharing data are discussed. In some of these areas, it is reasonably clear how to move forward. In other areas, there are significant open questions that need to be addressed by all data repositories. Using that baseline information, the question of whether data archives can be effective in understanding a complex disease is explored. The major goal of such a data archive is likely to be identifying biomarkers that define sub-populations of the disease.

Keywords: Common data elements; Consents; Data infrastructure; Data repositories; Data sharing; Imaging data.

Publication types

  • Review
  • Research Support, N.I.H., Extramural

MeSH terms

  • Database Management Systems / organization & administration*
  • Databases, Factual*
  • Datasets as Topic*
  • Disease*
  • Humans
  • Information Storage and Retrieval / methods*
  • Population Surveillance / methods*
  • Registries*