Studies
Studies Tab
| Field | Field Description | Permitted Values | Value Description | Study-Specific Notes |
|---|---|---|---|---|
| Harmonized Data | Whether study data has been aligned with INCLUDE clinical data model | H | Harmonized | |
| U | Unharmonized | |||
| GUID | Studies labeled with a 'G' are using NDAR GUIDs, some of which have been submitted to the INCLUDE DCC and included in the INCLUDE GUID mapping file. | |||
| Code | Unique identifier for each study | |||
| Name | Full name of study | |||
| Program | Funding program for study | INCLUDE | NIH INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project | |
| KF | Gabriella Miller Kids First Pediatric Research Program | |||
| Domain | Medical Subject Heading (MeSH) terms describing main research domain(s) of study, other than Down syndrome | |||
| dbGaP | dbGaP accession code | |||
| Participants | Number of participants in this study | |||
| Families | Number of families in this Study | |||
| Biospecimen | Number of biospecimens in this study | |||
| Files | Number of data files in this study | |||
| Data Category Columns | Genomics, Transcriptomics, Proteomics, Immune Profiling, Metabolomics columns | Checkmark = study has data files of this category |
Individual Study/Dataset Pages
Summary
| Field | Field Description | Permitted Values | Value Description | Study-Specific Notes |
|---|---|---|---|---|
| Study Code | Unique identifier for each study | |||
| Study Name | Full name of study | |||
| Program | Funding program for study | INCLUDE | NIH INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project | |
| KF | Gabriella Miller Kids First Pediatric Research Program | |||
| dbGaP Accession Number | dbGaP accession number | |||
| GUID Available | TRUE = Study uses NDAR GUIDs that are available in the INCLUDE GUID mapping file. | TRUE, FALSE | ||
| Participant Lifespan | Focus age group(s) of study population | Fetal | ||
| Neonatal | 0-28 days old | |||
| Pediatric | Birth-17 years old | |||
| Adult | 18+ years old | |||
| Description | Overview of study | |||
| Research Domain | Medical Subject Heading (MeSH) terms describing main research domain(s) of study, other than Down syndrome | |||
| Clinical Data Source Type | Sources of clinical data collected from study participants | Medical Record | Data obtained directly from medical record | |
| Investigator Assessment | Data obtained by examination, interview, etc. with investigator | |||
| Participant or Caregiver Report | Data obtained from survey, questionnaire, etc. | |||
| Data Category | Expected general data categories of files in this study | |||
| Selection Criteria | Brief description of inclusion and/or exclusion criteria for the study | |||
| Study Design | Overall design of study, including whether it is longitudinal and whether family members/unrelated controls are also enrolled | |||
| Study Website | Website for the study | |||
| Publication | Publication(s) describing the Study's rationale and methodology | |||
| Principal Investigator | Name(s) of Principal Investigator(s) of this study | |||
| Institution | Institution(s) of Principal Investigator(s) for this study | |||
| Study Contact | Name and email address of contact person for this study | |||
| Virtual Biorepository Email | Email address for Virtual Biorepository requests/inquiries, if participating | |||
| Virtual Biorepository URL | Link to Virtual Biorepository request form, if participating | |||
| Citation Statement | Statement that secondary data users should use to acknowledge use of this dataset. If blank, use "The results analyzed and here are based in whole or in part upon data generated by the INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project <insert accession number(s) and/or study DOI(s)>, and were accessed from the INCLUDE Data Hub and <insert other database(s)>." | |||
| Acknowledgment | Funding statement and acknowledgments for this study |
Data Access
| Field | Field Description | Permitted Values | Value Description | Study-Specific Notes |
|---|---|---|---|---|
| Access Limitation | Data access limitations, using terms from the GA4GH Data Use Ontology (DUO) | |||
| Access Requirement | Data access requirements, using terms from the GA4GH Data Use Ontology (DUO) |
Dataset
| Field | Field Description | Permitted Values | Value Description | Study-Specific Notes |
|---|---|---|---|---|
| Dataset ID | Unique identifier for the dataset | |||
| Description | Description of dataset | |||
| Data Collection Start (Year) | Year data collection started | |||
| Data Collection End (Year) | Year data collection ended | |||
| Data Category | General category of data in this Dataset | |||
| Data Type | Specific type of data contained in Dataset (e.g. Preprocessed metabolite relative abundance, Absolute protein concentration, Aligned reads, Simple nucleotide variations, GVCF, Gene expression quantifications, Gene fusions, Somatic copy number variations, Somatic structural variations) | |||
| Experimental Strategy | Experimental method used to obtain data in Dataset; pipe-separated if multiple (e.g. Whole genome sequencing, RNAseq, Multiplex immunoassay, Mass spec metabolomics) | |||
| Experimental Platform | Specific platform used to perform experiment (e.g. SOMAscan, MSD, Luminex, Illumina) | |||
| Publication | Publication(s) describing the Dataset's rationale and methodology | |||
| Repository | URL if dataset is already deposited in a public repository other than dbGaP (e.g. LONI, Metabolomics Workbench, etc.) |
Updated about 2 months ago