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Data Releases: Feb 2025 and Oct 2024

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Release Date: February 2025

Overview

The February 2025 release focused on the addition of study metadata for new studies in the INCLUDE Data Coordinating Center (DCC), updates to all available study metadata and dataset metadata, and the addition of dataset groupings to the Human Trisome Project’s data.

INCLUDE DCC Study Updates

This release included updated and expanded harmonized study metadata. The updated metadata improves the accuracy and completeness of study information and aligns with the latest metadata standards used in the platform.

New Studies

  • DS-VitE: Vitamin E Trial in Persons with Down Syndrome
  • DS-HSAT: A preliminary study of acceptability, feasibility, and performance of home sleep apnea testing in youth with Down syndrome
  • BEST21: Behaviors and Executive Skills in T21

Other Study Metadata Updates:

  • Added existing but missing study dbGaP accessions.
  • Updated publication and website links for the Human Trisome Project, AADSC, and BrainPower studies.
  • Revised Data Category and Study Design fields for added clarity.

INCLUDE DCC Datasets Updates

As part of a previous release, the INCLUDE DCC introduced dataset bundling of data files from a research study within Study Pages for ease of discoverability and reuse. This data release added datasets for previously released data in the Data Hub and updates to dataset metadata.

New Datasets:

  • Human Trisome Project (HTP)
    • HTP MSD Plasma Inflammatory Markers (2020)
    • HTP Plasma Metabolomics (2020)
    • HTP Whole Blood RNAseq (2020)
    • HTP WGS (2018 X01)
    • HTP WGS (2021 X01)
    • HTP White Blood Cell RNAseq (2021 X01)
    • HTP Whole Blood RNAseq (2021 X01)
  • Impact: Users can now browse the above HTP datasets as part of the Study Page and, with appropriate access, import the dataset bundle into CAVATICA.

Dataset Metadata Updates:

  • Updated ‘DS-Connect Unharmonized Demographic/Clinical Data’ description for added clarity.
  • Revised number of files for all existing datasets to accurately capture data dictionaries included in the dataset bundle.

Known Issues

  • Principal Investigators: The “Principal Investigators” field is not populating correctly across all INCLUDE Studies.

Additional Information

Release Date: October 2024

Overview

The October 2024 data release introduces newly onboarded studies and critical new datasets that expand the scope and utility of data available through the INCLUDE Data Hub.

INCLUDE DCC Study Updates

Study updates for this release focused on populating study pages for studies who have recently begun the intake process with the INCLUDE Data Coordinating Center (DCC) and refining processes to best support end users.

New Studies:

  • DS-Determined: Using PCORnet to Expand the DS-CONNECT Cohort Through Healthcare System Recruitment, Incorporating Electronic Health Records, and Assessing Self-Determination
  • AADSC: Advocate Adult Down Syndrome Center (AADSC)
  • AECOM-DS: Upper Airway Structure and Function and Risk for OSA in Children with Down Syndrome
  • OPTimal: Early Health and Motor Abilities in Down Syndrome
  • EXcEEDS: Executive Function Early Evaluation in Down Syndrome
  • DECIDAS: DEtermining Capacity and Informing Down syndrome Assent Strategies

Other Study Metadata Updates:

  • The following fields have been added to the Study Metadata to best describe the data a study has and support reuse of that data.
    • Acknowledgments: Funding statement and acknowledgments for this study.
    • Citation Statement: Statement that secondary data users should use to cite use of this dataset.
    • GUID Type: System used to generate globally unique identifiers (GUIDs).
    • Data Category: Categories of data expected to be collected in this study.

INCLUDE DCC Datasets Updates

This release focused on the introduction of two critical datasets to the INCLUDE Data Hub: DS-Connect Unharmonized Demographic/Clinical Data and INCLUDE-GUIDs. These datasets bring a new data modality – unharmonized clinical data – as originally contributed to the INCLUDE DCC, and a GUID mapping file enabling users to de-duplicate participants across studies in their analyses.

New Datasets

  • DS-Connect Unharmonized Demographic/Clinical Data
    • Description: Self-reported (or caregiver-reported) participant demographic and health history data, as originally shared with the INCLUDE DCC (i.e., not harmonized with other INCLUDE cohorts). May contain more data than is currently displayed in the Data Exploration section. This dataset contains 3 files: demographic data, Initial Health Questionnaire (IHQ) data, and a data dictionary.
  • INCLUDE-GUIDs
    • Description: This mapping file lists all INCLUDE Participant IDs for studies that have provided GUIDs to the INCLUDE DCC. Where available, the GUID associated with that participant is provided. Not all participants have GUIDs. A GUID will have multiple associated Participant IDs if that Participant was enrolled in multiple studies. Data for that Participant will be treated individually for each study in the Data Hub, so it may need to be de-duplicated in your analyses.
  • Impact: Users with appropriate access can now access unharmonized clinical data as provided by the DS-Connect team and the INCLUDE-GUID mapping file.

Known Issues

  • Principal Investigators: The Principal Investigator field is not populating correctly across all INCLUDE Studies.

Additional Information

Updated 23 days ago