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Data Release: August 2025
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Data Release: August 2025

Release Version: v6

Overview

As of the 2025 v6 data release, a total of 29 studies are available in the Data Hub. This release focused on the addition of new harmonized data to the INCLUDE Data Coordinating Center (DCC), while also expanding the features available in the INCLUDE DCC’s harmonized data set. This release also incorporates unharmonized datasets representing data from a variety of cohorts and data types.

Some numbers for this release:

  • New studies added: 7
  • New participants added: 6,349
  • New biospecimens added: 18,846
  • New data files added: 2,531
  • New data categories/types: Cognitive, Sleep, Immune Profiling (TCR/BCR-seq), Imaging Metadata, Physical Activity, Oxygen Kinetics

There are three categories of updates below:

  • New study pages added
  • New studies with data
  • Updates to existing studies

New Study Pages

CCDS

DS-HOME

  • Study Page: https://portal.includedcc.org/studies/DS-HOME
  • Study Title: Feasibility and outcome measures for infants with Down syndrome: Advancing clinical trial readiness for a harness-based mobility intervention
  • Principal Investigator: Jana Iverson
  • Institution: Boston University

DSpostBFmulti

DSRRS

  • Study Page: https://portal.includedcc.org/studies/DSRRS
  • Study Title: Development and Validation of the Down Syndrome Regression Rating Scales
  • Principal Investigator: Ruth Brown
  • Institution: Virginia Commonwealth University

IBIS-DS

  • Study Page: https://portal.includedcc.org/studies/IBIS-DS
  • Study Title: A Longitudinal MRI Study Characterizing Very Early Brain Development in Infants with Down Syndrome
  • Principal Investigator: Natasha Marrus
  • Institution: Washington University in St. Louis School of Medicine

JAKi-DS

  • Study Page: https://portal.includedcc.org/studies/JAKi-DS
  • Study Title: JAK Inhibition in Down Syndrome
  • Principal Investigator: Joaquin Espinosa
  • Institution: Linda Crnic Institute for Down Syndrome, University of Colorado Anschutz Medical Campus

TOMI

  • Study Page: https://portal.includedcc.org/studies/TOMI
  • Study Title: Leveraging technology to identify outcome measures for young children with Down syndrome
  • Principal Investigator: Audra Sterling
  • Institution: University of Wisconsin-Madison

New Studies with Data

AECOM-DS

  • Study Page: https://portal.includedcc.org/studies/AECOM-DS
  • Cohort Size: 25
  • Access: Registered
  • Harmonized Data:
    • Study Metadata
    • Participants
    • Conditions
  • Unharmonized Datasets:
    • UH-Clinical-MRI: Demographic/clinical data and MRI quality metrics

AADSC

  • Study Page: https://portal.includedcc.org/studies/AADSC
  • Cohort Size: 6023
  • Access: Registered
  • Harmonized Data:
    • Study Metadata
    • Participants
    • Conditions
  • Notes:
    • Participants with age listed as “Age 90 or older” in source data were generalized to numeric age of 90 years
    • The data was submitted to the INCLUDE DCC as extracted from the clinic database; documentation errors may have been present in the database.

DS-DETERMINED

  • Study Page: https://portal.includedcc.org/studies/DS-DETERMINED
  • Cohort Size: 123
  • Access: Registered
  • Harmonized Data:
    • Study Metadata
    • Participants
    • Conditions
  • Unharmonized Datasets:
    • DSD-UH-Clinical-CDM: Demographic and clinical data from electronic medical records in PCORnet
    • DSD-UH-Clinical-DSC: Survey data from DS-Connect
    • DSD-Cognitive-SDI: Responses to Self-Determination Inventory measure
  • Notes:
    • DS-DETERMINED consists of three different data sources: DS-Connect, the PCORnet Common Data Model (CDM), and the Self-Determination Index (SDI). The harmonized data for DS-DETERMINED include Participant and Condition information drawn from the CDM and SDI, with links in the Data Hub to those who also participated in DS-Connect.
    • Values for Measurements in the harmonized data were obtained from the Vital table of the CDM dataset. Any repeated measures for participants at the same time points were as reported in the source data.

DSpostBFmulti

Updates to Existing Studies

BrainPower

  • Study Page: https://portal.includedcc.org/studies/BrainPower
  • Harmonized Data Updates:
    • Conditions and Participant data have been re-harmonized.
    • Ages in days now provided by contributors for baseline, 3-month, and 6-month visits.
    • Unstructured free-text heart conditions were reorganized into structured columns and responses incorporated into the harmonized conditions data
    • Anthropometric measurements from the first three timepoints in the study (baseline, 3 months, and 6 months) are also now in the harmonized conditions data.
  • Unharmonized Datasets Added:
    • BrainPower-AgeLatency: Participant ages at various events
    • BrainPower-Anthropometrics: Measurements including height, weight, heart rate, and blood pressure
    • BrainPower-CognitiveFunction: Cognitive functional assessments from the Cambridge Neuropsychological Test Automated Battery (CANTAB)
    • BrainPower-UH-Demographics: Demographics of participants
    • BrainPower-UH-HealthConditions: Health conditions of participants at baseline
    • BrainPower-Imaging: Brain imaging measures from MRI
    • BrainPower-O2Kinetics: Processed VO2 data from peak exercise test on treadmill
    • BrainPower-PhysicalActivity-Day: Day-level summary of physical activity from ActiGraph
    • BrainPower-PhysicalActivity-Person: Person-level summary of physical activity from ActiGraph
    • BrainPower-Randomization: Information of stratification and randomization of participants to intervention groups

BRI-DSR

DS-Sleep

  • Study Page: https://portal.includedcc.org/studies/DS-Sleep
  • Unharmonized Datasets Added:
    • DS-Sleep-UH-Clinical: Demographic and health history data
    • DS-Sleep-UH-Sleep: Sleep evaluation data from standardized interview/assessment, Children’s Sleep Habits Questionnaire (CSHQ), Sleep Disorders Symptom Checklist-25 (SDS-25), and Epworth Sleepiness Scale (ESS).

DSC

  • Study Page: https://portal.includedcc.org/studies/DSC
  • Unharmonized Data Update:
    • DSC-UH-Clinical: The record for participant DSC21201/pt-wjpe82ywzd has been removed from the unharmonized demographic and health questionnaire files due to data quality issues. This participant’s data is still visible in the Data Exploration tab of the Data Hub but will be removed in the next release.

HTP

*Please use the DOI and accompanying citation information when referencing this study or the datasets above.

  • Harmonized Data Updates:
    • CORRECTION: The sex of participant HTP1086 has been corrected to Male (was previously shown as Female)
    • Added 170 new participants and associated biospecimens
    • Light edits to Biospecimen data to remove volumes, as they are no longer accurate, and any unusable or unavailable parent samples.
  • Unharmonized Datasets Added:
    • HTP-BCRseq-2022-X01: Sequencing of B-cell receptor repertoire in PAXgene whole-blood RNA samples
    • HTP-TCRseq-2022-X01: Sequencing of T-cell receptor repertoire in PAXgene whole-blood RNA samples

    TEAM-DS

    X01-deSmith

    • Study Page: https://portal.includedcc.org/studies/X01-deSmith
    • Harmonized Dataset Added:
      • X01-deSmith-WGS-2021: Grouped existing WGS files into a dataset for organizational purposes
    • Unharmonized Dataset Added:
      • X01-deSmith-UH-Clinical: Demographics, health history, and clinical measures such as birth weight, blood labs, GATA1 mutation status, and leukemia status

    X01-Hakonarson

    • Study Page: https://portal.includedcc.org/studies/X01-Hakonarson
    • Harmonized Datasets Added:
      • X01-Hakonarson-RNAseq-2021: Grouped existing RNAseq files into a dataset for organizational purposes
      • X01-Hakonarson-WGS-2021: Grouped existing WGS files into a dataset for organizational purposes
    • Unharmonized Dataset Added:
      • X01-Hakonarson-UH-Clinical: Participant demographic and health history data; may contain more conditions than are currently displayed in the Data Hub

    Other Updates

    New Features in the Data Exploration Section of the Data Hub

    • Data on Interventions (e.g. cardiac surgery) for participants have been annotated with terms from the Medical Action Ontology (MAxO) and can be viewed/searched in the Participants tab (we are working on making these available in the clinical data download as well)
    • Measurements (e.g. height, weight, BMI) are now available through the clinical data download (select participants of interest and click the “Download clinical data” button
    • Some participants from DS-DETERMINED also have data available from DS-Connect. These are marked with the “multi-participant” icon shown below. You can hover over the icon and click “See all participant records for this individual” to show the records from both studies.

    Citing the INCLUDE Data Hub

    Data Corrections and Caveats

    • DS-Connect – participant record DSC21201/pt-wjpe82ywzd was removed from the unharmonized clinical data file due to data quality issues (we will remove this record from Data Exploration in the next release)
    • HTP – the sex of participant HTP1086/pt-x4idjb3rdr has been corrected to Male
    • Some studies that provided data from clinical records (e.g. AADSC, DS-DETERMINED) may have eccentricities as captured at the clinic – please contact us with any questions

    Known Issues

    • The “Principal Investigators” field is not populating correctly across all INCLUDE Studies.
    • Some Datasets are missing the “View in exploration” button – see the File section of the Study Page for links to files
    • We are aware of some current issues with file downloads – please contact us with any questions

    Additional Information

    Resources and Support

    Links:

    How to ask questions/provide feedback to the INCLUDE DCC:

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    Resources for Researchers & Contributors

    Find protocols, SOPs, training guides, and more in our resource hub.