The purpose of the EDRN Resource Network Exchange (ERNE) is to assist EDRN investigators with identifying potential collaborators who have specimens and associated epidemiological and clinical data of interest by allowing access to databases remotely via the EDRN Public Portal.

Requirements for Participating Members

  • Ability to provide data/specimen information
  • Commitment to sharing information with other EDRN members to promote potential collaboration
  • Availability of technical infrastructure and resources
  • IRB approval
  • The following type of personnel available:
  • Informatics Lead - The informatics lead will provide oversight for all design, process and data operations associated with the informatics project. Will be the point of contact and participate in EDRN Informatics telecons on a regular basis.
  • Data Engineer - Will support mapping of the institutional data elements and database to the EDRN Common Data Elements (CDEs) using the EDRN CDE Mapping Tool. Will participate on EDRN Informatics telecons as needed.
  • Systems Administrator/Network Administrator - Will configure and install all software for the project server. Will provide basic operations for managing the server including administration and security. Will work with institutional computing programs to configure appropriate access to the project server. Will participate on EDRN Informatics telecons as needed.

    Protection of patient privacy and data/specimen ownership

    • This is information sharing, not data/specimen sharing. The owner of the data/specimen has final say on potential collaboration which may lead to data/specimen sharing.
    • Personal identifiers will not be accessible to the Informatics Center or to the requestor via the query system to protect study participant confidentiality.
    • The information that is shared is based on the EDRN common data elements and considerations for maintaining study participant confidentiality.
    • The Informatics Center will ensure that all policies for access to the data are followed. All queries will be generated through the user interface tools provided via the EDRN Public Portal. This interface will allow only predefined queries to be created and transmitted to the participating sites, thus returning limited query results to the requestor.
    • Only information that is specified in the design of the query user interface will be returned to the inquiring party for the purpose of determining the feasibility of collaboration. In the specification and design of the system great care will be taken to determine the queries that can be made and the results that can be returned. Thus, a query on the number of participants with prostate biopsies who are aged 50-70 and African American would be possible, but a query that allows one to calculate the correlation between their disease stages and PSA measures would not be possible since this would not promote collaboration and would potentially be publishable.
    • Participating EDRN sites will be gatekeepers of their databases by specifying the data the Informatics Center will be allowed to query.
    • The requesting party agrees that they will not use the obtained information for publication without the consent of the owner of the data.