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The National Institutes of Health launched the Environmental influences on Child Health Outcomes (ECHO) initiative in September 2016. The Program focuses on five pediatric outcome areas: obesity, neurodevelopment, airways, pre-, peri-, and postnatal outcomes, and positive health. The ECHO Cohort Study incorporates longitudinal data on over 46,000 pregnancies, 42,000 children, and 900 partners from 69 pediatric cohorts to investigate how exposure to environmental factors — including physical, chemical, biological, social, behavioral, natural, and built environments — impact child health and development. By bringing data together into one large ECHO Cohort, scientists can address questions that no single cohort, or a few working together, can answer. Most of the cohorts existed prior to ECHO, bringing a wealth of extant data for compilation and harmonization, in addition to standardized collection of new essential and recommended data elements. 

How Can I Access the Data?

De-identified, public use ECHO cohort data are available in the All of Us Researcher Workbench. 

Researchers who complete All of Us registration and whose affiliated institution has completed the Data Use and Research Agreement (DURA) that allows for ECHO access are eligible to access the data.  You can check to see if your institution allows access to ECHO data here. If your institution does not currently allow access to ECHO data, please reach out to our access team at aoudurasupport@vumc.org to request additional information about how you can work with your institution to update their agreement. 

The data are hosted in the Researcher Workbench via a data collection labeled, “Environmental influences on Child Health Outcomes (ECHO)-wide Cohort (ECHO Cohorts)”. The data collection can be added to a workspace for analysis following the workspace creation instructions found here. The dataset can be analyzed alone or in combination with All of Us datasets by adding both the ECHO and All of Us data collections to the same workspace. 

Note: The All of Us and ECHO cohorts are enrolled and managed separately and, thus, the datasets are distinct. ECHO data is not linked to All of Us participant records..

What’s Included in the Data?

The de-identified public dataset is for “Cycle 2” of the study, which includes both Cycle 1 and 2 data. Most of the Cycle 1 cohorts existed prior to ECHO Cycle 1, bringing a wealth of extant data for compilation and harmonization. In ECHO Cycle 1, a standardized collection protocol of new essential and recommended data elements was established. ECHO Cycle 2 includes many of the cohorts from Cycle 1 in addition to several newly established pregnancy cohort sites. The ECHO Cohort Data and Biospecimen Collection Protocol (ECP)  in Cycle 2 requires all cohort sites to follow the same visit schedule and same instruments according to age of the child (or time since end of pregnancy) or gestational age of the pregnant participant. The ECP has been expanded to further investigate environmental factors during the preconception period following the end of an enrolled pregnancy using data collected on the previously pregnant participant and their partner.

The current release provides data on 89,529 ECHO Cohort participants as follows:

• 46,403 pregnancies
• 42,224 children
• 902 partners

The dataset includes  demographic information, environmental exposure data, pregnancy and birth information, as well as additional data across a series of research domains that support child health outcomes and pre, peri, and post-natal outcomes research.  Research data included:

• Demographic data such as race, ethnicity, gender, socioeconomic status, and education.
• Health condition data such as upper and lower airway health, pre-peri, and post-natal health outcomes, obesity, and neurodevelopment.
• Early pediatric development information such as  growth, sleep, feeding, milestones, and physical activity.
• Environmental data such as physical, chemical, and psychosocial.
• Pregnancy and birth data such as maternal data, physical activity, weight gain, substance use, and delivery outcomes.

Where Can I Find Support Resources

The general information for the ECHO Cohort Study can be found at echochildren.org. For additional documentation and resources about the ECHO data, please reference ECHOPortal at echoportal.org. 

ECHOPortal (echoportal.org) is the central resource for accessing documentation, tools, and information that supports use of ECHO Cohort data. The Resource Library provides access to study documentation, including data collection forms, informed consents and assent templates, protocols, manuals, and other reference material. PlatIPUS (Platform: Inform and Provide User Search) enables users to explore metadata describing the ECHO Cohort, including participants characteristics, available measures, biospecimens, and data availability. The sections below describe the support materials and resources available in each area of ECHOPortal.

Below are descriptions of support materials available in each section of ECHOPortal.

Resource Library:

• Printable Biospecimen Forms and Instructions – Provides documents related to biospecimen collection from both Cycle 1 and Cycle 2, including Specimen Tracking Forms (STFs), STF Completion Instructions, and Specimen Information Forms.
• Printable Data Collection Forms – Provides the Data Collection Forms (DCFs) used in both Cycle 1 and Cycle 2. Spanish versions of the DCFs are available using the language toggle at the top right corner of the page.
• ·Public Use Data Reference Materials – Contains documentation that supports the use and interpretation of the ECHO Cohort data. Some of the documents are specific to the public use data and most have both cycle 1 and cycle 2 versions.
  • Data Analyst Primer for the ECHO Cohort Database – Describes the ECHO Program and the ECHO Cohort data in detail, including terminology, data structure, and analytical considerations.
  • ECHO Cohort Data and Biospecimen Collection Protocol – Describes the data elements and biospecimens collected throughout participant life course as part of ECHO Cohort Study.
  • Consents and Assent Templates – Template informed consent and assent documents used across the ECHO Cohort. There are different templates for each type of participant, and each template has both an English and Spanish version.
  • Measures Master List – An Excel file that lists all the measures included in the current public data release, and metadata such as the corresponding database table names and the study visit during which the measure is administered.
  • De-Identification of ECHO Cohort Public Data Release – Describes the procedures used to prepare the public-use data release such as participant exclusions and data modifications.
  • Guidance on Avoiding Stigmatizing Research – Recommends best practices for analyzing, interpreting, and reporting research findings using ECHO data in ways that minimize stigmatization of participants and populations.
  • Release Notes – Summarizes the contents of the current public data release and highlights important differences from the prior release.
  • ECHO Codebook for Public Use – Provides release-specific documentation for all datasets and variables included in the current public data release.
  • Analysis of Non-Omics Bioassay Results – Provides guidance for analyzing non-omics bioassay results, including descriptions of available data tables, analytical considerations, and background information for each assay class.
  • Analysis Guidance for the NIH Toolbox Cognition Battery – Provides guidance for using NIH Toolbox Cognition Battery measures in ECHO analyses, including instrument descriptions, scoring procedures, harmonized variables, and important considerations when comparing data collected across study cycles.
  • Analysis Guidance for PROMIS® and NIH Toolbox Self- and Proxy-Report Measures – Introduces the PROMIS® and NIH Toolbox self- and proxy-report measures in ECHO. This guidance covers all NIH Toolbox measures (except the Cognition Battery covered in the Analysis Guidance for NIH Toolbox Cognition Measures document). The document includes background on instrument development, scoring, harmonized variables, and analytical considerations.

PlatIPUS:

• Browse – Exploration tool to determine how many participants have data for each derived variable file, assay result, and form.
• Query – Build custom study populations by applying logical operators (AND/OR).
• Data Dictionary – Search the data dictionary by measure name, variable name, variable context (questionnaire text), or variable response values to identify variables of interest.
• Harmonization – Access documentation for harmonized/derived variable tables, including variable derivations, harmonization methods, and supporting technical documentation.

Questions about accessing the data on the Researcher Workbench or using the Workbench tools should be emailed to support@researchallofus.org. The support resources referenced above should otherwise be referenced for questions about the ECHO data. 

How Do I Cite the Dataset?

When using these data for manuscripts and presentations, investigators are legally required to acknowledge the funding sources from the National Institutes of Health (NIH) and other groups, along with the standard NIH disclaimer.

NIH Disclaimer:

“The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.”

Funding Acknowledgement for Manuscripts:

“Research reported in this publication was supported by the Environmental influences on Child Health Outcomes (ECHO) Program, Office of the Director, National Institutes of Health, under Award Numbers U2COD023375 (Coordinating Center), U24OD023382 (Data Analysis Center), U24OD023319 with co-funding from the Office of Behavioral and Social Science Research (Measurement Core), U24OD035523 (Lab Core), ES0266542 (HHEAR), U24ES026539 (HHEAR Barbara O’Brien), U2CES026533 (HHEAR Lisa Peterson), U2CES026542 (HHEAR Patrick Parsons, Kannan Kurunthacalam), U2CES030859 (HHEAR Manish Arora), U2CES030857 (HHEAR Timothy R. Fennell, Susan J. Sumner, Xiuxia Du), U2CES026555 (HHEAR Susan L. Teitelbaum), U2CES026561 (HHEAR Robert O. Wright), U2CES030851 (HHEAR Heather M. Stapleton, P. Lee Ferguson), UG3/UH3OD023251 (Akram Alshawabkeh), UH3OD023320 and UG3OD035546 (Judy Aschner), UH3OD023332 (Clancy Blair, Leonardo Trasande), UG3/UH3OD023253 (Carlos Camargo), UG3/UH3OD023248 and UG3OD035526 (Dana Dabelea), UG3/UH3OD023313 (Daphne Koinis Mitchell), UH3OD023328 (Cristiane Duarte), UH3OD023318 (Anne Dunlop), UG3/UH3OD023279 (Amy Elliott), UG3/UH3OD023289 (Assiamira Ferrara), UG3/UH3OD023282 (James Gern), UH3OD023287 (Carrie Breton), UG3/UH3OD023365 (Irva Hertz-Picciotto), UG3/UH3OD023244 (Alison Hipwell), UG3/UH3OD023275 (Margaret Karagas), UH3OD023271 and UG3OD035528 (Catherine Karr), UH3OD023347 (Barry Lester), UG3/UH3OD023389 (Leslie Leve), UG3/UH3OD023344 (Debra MacKenzie), UH3OD023268 (Scott Weiss), UG3/UH3OD023288 (Cynthia McEvoy), UG3/UH3OD023342 (Kristen Lyall), UG3/UH3OD023349 (Thomas O’Connor), UH3OD023286 and UG3OD035533 (Emily Oken), UG3/UH3OD023348 (Mike O’Shea), UG3/UH3OD023285 (Jean Kerver), UG3/UH3OD023290 (Julie Herbstman), UG3/UH3OD023272 (Susan Schantz), UG3/UH3OD023249 (Joseph Stanford), UG3/UH3OD023305 (Leonardo Trasande), UG3/UH3OD023337 (Rosalind Wright), UG3OD035508 (Sheela Sathyanarayana), UG3OD035509 (Anne Marie Singh), UG3OD035513 and UG3OD035532 (Annemarie Stroustrup), UG3OD035516 and UG3OD035517 (Tina Hartert), UG3OD035518 (Jennifer Straughen), UG3OD035519 (Qi Zhao), UG3OD035521 (Katherine Rivera-Spoljaric), UG3OD035527 (Emily S Barrett), UG3OD035540 (Monique Marie Hedderson), UG3OD035543 (Kelly J Hunt), UG3OD035537 (Sunni L Mumford), UG3OD035529 (Hong-Ngoc Nguyen), UG3OD035542 (Hudson Santos), UG3OD035550 (Rebecca Schmidt), UG3OD035536 (Jonathan Slaughter), UG3OD035544 (Kristina Whitworth).”

• ECHO Background_AofU Data Platform_Final V3.pdf2 MB