LEUPP, Ariz. — A data-sharing and use agreement between the Navajo Nation and NIH grantees of the Environmental influences on Child Health Outcomes (ECHO) Program was ratified on Tuesday in a ceremony at the Navajo Nation Head Start Center in Leupp, Arizona. The agreement was signed by the Navajo Nation, Johns Hopkins University (JHU) and RTI International.
The agreement, which is the first Tribal data-sharing agreement for a nationwide research consortium creating a large-scale database, enables the Navajo Birth Cohort Study (NBCS) to continue as part of the ECHO program and NBCS individual participant data to be shared with ECHO consortium members.
Led by the University of New Mexico, Albuquerque, the NBCS is investigating the effects of environmental exposure to uranium and other toxicants on pregnancy outcomes and child development on the Navajo Nation.
JHU and RTI are partnered in the ECHO program as the Data Analysis Center (DAC), which is responsible for secure data management and statistical analysis across the ECHO cohort studies.
Members from ECHO who attended the signing ceremony with President Jonathan Nez of the Navajo Nation included Dr. Lisa Jacobson from JHU and Dr. Corette Parker from RTI, Principal Investigators of the DAC, Dr. Johnnye Lewis, Principal Investigator of the NBCS, and Dr. Matthew Gillman, NIH director of the ECHO Program. Other officials in attendance included HHS Deputy Secretary Eric Hargan and NIH Deputy Director Dr. Lawrence Tabak.
“This agreement with the Navajo Nation has special provisions that we will implement at the DAC to protect privacy rights of participants in the NBCS,” said Corette Parker, DrPH, senior biostatistician at RTI and one of the Principal Investigators at the DAC. “We are grateful to the Navajo Nation for allowing the NBCS to participate in this consortium under these special provisions and we will work diligently to uphold the terms of the agreement.”
The agreement is the culmination of two years of discussion facilitated by NIH. It was created to respect Navajo Nation cultural beliefs, Tribal sovereignty and community values.
Launched in 2016, ECHO aims to enhance the health of children for generations to come. ECHO investigators study the effects of a broad range of early environmental influences on child health and development. The program consists of 71 existing and ongoing observational studies, now including the NBCS, as well as a pediatric clinical trials network. Research conducted through ECHO focuses on five key pediatric outcomes that have a high public health impact: pre-, peri-, and postnatal outcomes; upper and lower airway health; obesity; neurodevelopment; and positive health, such as happiness and a sense of well-being.
For more information about ECHO, visit https://echochildren.org/.