Outcome Profile

This profile includes 7 data elements to record information on the therapy and intervention outcome with a focus on patient’s vital status with the date and cause of death. Also includes the date a patient was last seen alive and the date of the last follow-up.

Data Element	Data Type	Description	Terminology	Required
vital_status	CodeableConcept	The vital status	Code Set	Required
death_dt_full	Date	An indication that the patient is no longer living, given by a date of death or boolean	N/A	Required
last_seen_alive_date	Date	The date the patient was last seen in the clinic alive	N/A	Required
last_clinical_fup_date	Date	The date of the last follow-up	N/A	Required
cause_death	CodeableConcept	The cause of death	Code Set	Required
date_cur_outcome	Date	Date of curation	N/A	Required
cur_by_outcome	String	The name of the curator who modified the instrument	N/A	Required if known

Notes

1. This profile is not repeatable and only one record is expected per patient
2. The “Code Set” is a custom set of codes defined by the JHU Team