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 website. As presented at the EDRN Steering Committee Meeting we are starting to add more EDRN sites to ERNE. We are contacting your site to be connected in this next round. The information in this document is intended to help you understand what this will involve. We strongly urge both the EDRN PI and the Informatics Manager to review this document. If after your review you have any questions, please contact Heather Kincaid immediately via email,, or phone, 206-667-7909. We will arrange a conference call to answer questions and discuss issues in more detail. The project is expected to start the second week of May 2005. We look forward to working with you!

Goals for Phase 4

Goals for Phase 4 are to further refine the user interface, modify query capabilities based on feedback received, develop new tools of interest to EDRN investigators, and make the system public. The last goal potentially brings about the most change to the current system and we have already begun thinking about the implications. Please note that from the beginning we have been cognizant of making the queries, user interface, and results screens HIPAA-compliant. We, therefore, are hopeful that the issues regarding confidentiality will be minimal. Participating sites will be involved in the discussions and decisions made. The main goal is to provide a useful tool to allow researchers to identify specimen resources to assist them in moving science forward, regardless of whether the system is public or private. The system is not intended to take away from or infringe on ownership rights of the participating sites!!

The information below should be helpful to you in better understanding the project and expectations of your site.

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.

System Server Requirements

ERNE uses a middleware software component called a product server that will run at your site.  You will need to identify an existing Internet-connected server or procure a new one in order to host the product server.  The server may run on the same system as your specimen database or on a separate system that must have read-only access to it.  We recommend one of the following configurations:

  • Single or dual CPU Apple Power Mac, iMac, Mac mini, or Xserve with a minimum of 1GB of memory, 1.25GHz or faster CPU, 2.5GB free disk space, and Mac OS X 10.3 or later.  This is the preferred configuration.
  • Single or dual CPU Intel-based i386 architecture system with a minimum of 1GB of memory, 1.0GHz or faster CPU, 2.5GB free disk space, running Linux (Red Hat, SuSE, or other distribution) with kernel version 2.4.20 or later, with Java 2 SDK 1.4.2 (not 1.5).
  • Single or multi CPU SPARC-based Solaris system with minimum of 2GB of memory, 2.0GHz or faster CPU, 2.5GB free disk space, running Solaris 10 or Linux (2.4.20) or later, with Java 2 SDK 1.4.2 (not 1.5).
  • Single or multi CPU Intel-based i386 architecture system with a minimum 2GB of memory, 1.2GHz or faster CPU, 2.5GB free disk space, running Windows XP Professional or Windows Server 2003, with Java 2 SDK 1.4.2 (not 1.5).

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 DMCC 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 DMCC 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 Web Site. 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 DMCC 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.