ECHO Program Policies

ECHO Program Policies

Updated: July 2025

The ECHO Cohort Publication Policy establishes the requirements that ECHO Cohort Consortium investigators must follow when proposing, publishing, and disseminating analyses of data on the ECHO Cohort Data Platform, including data arising from assays of specimens from the ECHO Cohort Biorepository.

Accomplishing ECHO’s mission requires assuring public trust in the scientific process and in the credibility and rigor of the program’s research. The ECHO Program recognizes that conflicts of interest (COIs) arise from the research enterprise. The ECHO Conflict of Interest Policy aims to identify and manage COIs to preserve transparency, independent decision-making, protection of research participants, and the integrity of ECHO research.

The ECHO Cohort Biospecimen Policy provides the overarching policy for biospecimens that the ECHO Cohort Consortium (Consortium) collects, stores, and uses. This policy directs 1) the standardized collection, processing, and storage of biospecimens; 2) the use and management of biospecimens; and 3) the preservation and use of ECHO biospecimen reserves, all according to processes that the Consortium establishes.

The ECHO Cohort Data Sharing and Use Policy balances two important goals: to maximize the value of the study data for timely and widest possible scientific discovery and to respect and protect the confidentiality of ECHO Cohort participants contributing data.

The ECHO Cohort Ancillary Studies Policy governs the process for proposing ancillary studies, which are research studies that derive funding from a non-ECHO source and accesses non-publicly available, limited identifiable data on the ECHO Cohort Data Platform or biospecimens in the ECHO Biorepository. This policy applies to any individual or institution proposing an ancillary study supported by non-ECHO funding that seeks access to ECHO Cohort data (with limited PII) only or ECHO Cohort biospecimens and associated data.

Pending Policies

Pending policies are under review and will be published when finalized.

  • Individual Return of Results Policy
  • Return of Summary Research Results Policy