Participants Tab

Field	Field Description	Permitted Values	Value Description	Study-Specific Notes
Participant ID	Unique Global identifier for Participant, assigned by INCLUDE DCC. Clicking on the ID brings up a detailed page of information about the Participant
External Participant ID	Unique identifier for Participant, assigned by data contributor. This column may not be shown by default but can be accessed using the "settings" gear in the upper right
Sex	Sex of Participant	Male; Female; Other; Unknown
Race	Race of Participant	American Indian or Alaska Native
		Asian		For X01-deSmith, this includes participants whose race was listed as "East Asian (Chinese)", "East Asian (Japanese)", or "South Asian"
		Black or African American
		Native Hawaiian or Other Pacific Islander
		White		For X01-deSmith, this includes participants whose race was listed as "Arabic"
		More than one race
		Other		For X01-deSmith, this includes participants whose race was listed as "Latino" (these participants will also have Ethnicity = Latino)
		Asked but Unknown
Ethnicity	Ethnicity of Participant	Hispanic or Latino		For X01-deSmith, this includes participants whose race was listed as "Latino" (these participants will also have Race = Other)
		Not Hispanic or Latino
		Asked but Unknown
Family Unit	Structure of family members participating in the study, relative to Proband	Proband-only	Proband only, no family members participating in study
		Duo	Proband + one parent
		Trio	Proband + two parents
		Trio+	Proband + two parents + other relatives
		Other	Other family structure, e.g. Proband + sibling, or twin Probands
		Control-only	Unrelated control, no family members with Down syndrome
Family ID	[download only] Unique identifer for family to which Participant belongs		NA if study did not include any family members
Father ID	[download only] Participant ID for Participant's father		NA if Participant is not the Proband
Mother ID	[download only] Participant ID for Participant's mother		NA if Participant is not the Proband
Family Member Relationship	[download only] Relationship of Participant to Proband	Proband	The first affected family member to join the study (some families may have two Probands, usually siblings)
		Father; Mother; Sibling; Other relative; Unrelated control
DS Status	Down syndrome status of Participant	T21	Trisomy 21
		D21	Disomy 21 (euploid)
Vital Status	[download only] Whether Participant is alive or dead	Alive; Dead; Unknown or not available
Age at the Last Vital Status (Days)	[download only] Age in days when participant's vital status was last recorded
Condition (Source Text)	[download only] Co-occurring Condition (phenotype or diagnosis), as described by data contributor. The Down Syndrome Genetic Diagnosis is also provided in this field.			Measures for ABC-DS participants are available by request from ABC-DS. For additional info and request form, visit https://www.nia.nih.gov/research/abc-ds#data
Age At Phenotype Assignment/Age at Diagnosis (Days)	[download only] Age in days at which Condition or Measure was observed, recorded, or diagnosed
Interpretation	[download only] Whether Condition was observed or not	Observed	Condition was observed or reported
		Not Observed	Participant was specifically examined or medical record queried for condition and found to be negative
Diagnosis (MONDO)	Mondo Disease Ontology term
Age at First Patient Engagement	Age (in days) of Participant at first study engagement (usually enrollment/registration)
Biospecimens	Number of biospecimens associated with this participant
Files	Number of data files associated with this participant