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Release Version: V5 (August 2024)

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Overview

This document provides an overview of the latest data release from the INCLUDE Data Coordinating Center (DCC). It includes details about new datasets, updates to existing datasets, new features, improvements, bug fixes, and any known issues.

New Studies with Data

TEAM-DS

Study Title: Evaluating Assessment and Medication Treatment of ADHD in Children
with Down Syndrome (TEAM-DS)

Description: See Study Page (here)

Harmonized Data Types: Study Metadata, Participants, and Conditions

  • Conditions in v5 release have the majority of condition data annotated. This includes the structured terms and some (but not all) free text. We anticipate updating this dataset in the future with more annotations.

Sample Size: 122 Participants

Access: Registered

BrainPower

Study Title: The Promotion of Physical Activity for the Prevention of Alzheimer’s
Disease in Adults with Down Syndrome (BrainPower)

Description: See Study Page (here)

Harmonized Data Types: Study Metadata, Participants, and Conditions

  • Conditions in v5 release have the majority of condition data annotated. This includes the structured terms and some (but not all) free text. We anticipate updating this dataset in the future with more annotations.
    • For example, the variable “name_heart_problem” (Question text: “What was the name of the heart problem?”) contains free text responses for which we have not finalized the annotation.

Sample Size: 82 Participants

Access: Registered

Updated Data From Studies

All Studies

Updates:

  • Populated study and dataset metadata in a structured manner for all existing studies within the Data Hub.

Impact:

  • Users can now browse Study Pages with study metadata in a centralized location
    to learn about a given study’s selection criteria, publications, principal investigator(s), etc.

DS-Connect (DSC)

Updates:

  • New Participant External IDs to provide extra layer of anonymity – please submit a support request if mapping between old and new Participant External IDs is needed
  • Latest clinical data updates from DS-Connect:
    • 159 Participants added since last release
    • We have removed 86 participants from the dataset since the launch of the
      INCLUDE Data Hub. Please see below for the respective Participant IDs. For your reference, the IDs listed below follow the old ID format:
      • 3191, 3362, 3419, 3427, 3574, 3638, 3675, 3678, 3754, 3768, 3798, 3838, 3971, 4012, 4188, 4215, 4239, 4310, 4377, 4393, 4453, 4559, 4606, 4628, 4659, 4681, 4761, 4834, 4875, 4960, 4964, 5004, 5018, 5093, 5140, 5175, 5202, 5264, 5294, 5322, 5391, 5433, 5539, 5585, 5670, 5794, 5869, 5892, 5932, 6015, 6057, 6248, 6295, 6314, 6416, 6468, 6500, 6510, 6695, 6779, 6923, 6993, 7007, 7217, 7296, 10485, 10552, 10563, 10608, 10724, 10855, 11318, 11507, 11655, 11832, 12284, 12308, 12529, 12688, 12856, 12857, 12881, 12887, 13026, 13046, 13194
  • Re-harmonized data to the latest INCLUDE Data Model

Impact:

  • New Participant External IDs (e.g. DSC12345) – Global IDs are unaffected

Human Trisome Project (HTP)

Updates:

  • Released 19 WGS Files and 635 RNA-Seq Files

Impact:

  • With the appropriate access, users can now access -omics files through the Data Hub.

X01-Hakonarson

Updates:

  • Released 1134 WGS Files and 379 RNA-seq Files

Impact:

  • With the appropriate access, users can now access -omics files through the Data Hub.

X01-deSmith

Updates:

  • Released 436 WGS Files

Impact:

  • With the appropriate access, users can now access -omics files through the Data Hub.

Known Issues

  • A subset of participants in the studies BRI-DSR, DS-Sleep, ABC-DS, DSC, X01-deSmith, BrainPower, and TEAM-DS are incorrectly being labeled as ‘Other’ race, as opposed to the intended ‘More than one race’.
  • ‘Unknown’ values for Ethnicity and Race are not populating correctly, resulting in ‘NoInformation’ values for a subset of participants in the studies DS360-CHD, DS-COG-ALL, DS-PCGC, and DS-NEXUS.
  • TEAM-DS and BrainPower Principal Investigator(s) not populating in respective Study Pages.

Additional Information

Current INCLUDE Data Model: v3.0

Release Notes: https://github.com/include-dcc/include-linkml/releases/tag/v3.0.0

Updated 23 days ago