Data/Sample Collection - ELSI Interoperability

The ELSI Interoperability module provides the following services: 

  • Development or Assessment for Prospective and Retrospective Harmonization

- Consent forms/Patient Information Leaflets/Public Website

- Recruitment Strategies

- Notification/Opt Out Mechanisms                                        

- Access/Data Sharing Policies

- Re-Contact Mechanisms                                   

- Return of Results Policies

- Publication/IP Policies and Procedures                               

- MTA’s and MOU’s

- Codes of Ethics/Conduct                                          

- Data Security Plans

- Specialized: Vulnerable comm.; Deceased; Pedia; Incompetent

  • Review of Proposed Policies/Procedures/Documents
  • Evaluation of ELSI Interoperability for federated or international Consortia
  • Development of E-Consent Web Interface/E-Re-Contact; R of R; Cloud Computing Policies
  • Support for REB Approval

         - Evaluation of Multi-Site Approval Mechanisms and Preparation of REB Documentation

  • Ongoing Ethics Consultation


ELSI Interoperability Node Leader: Emily Kirby