Patient Information Profile

This profile inlcudes 40 data elements to capture the cancer patient’s demographics, contact information, performance status, tests performed, and referring physician. Five sub-profiles (not shown here) organize some of these elements into relevant groups (Address, Referring Physician. Testing Performed, ECOG Performance Status, and Karnofsky Performance Status).

Data Element	Data Type	Description	Terminology	Required
record_id	Integer	Record id in the database	N/A	Required
dob	Date	Date of birth for the individual	N/A	Required
gender	CodeableConcept	A gender classification used for administrative purposes, not necessarily the same as a biological description or a sex identity	FHIR	Required
sex	CodeableConcept	The sex the patient was given at birth	Code Set	Required
pt_address_zipcode	String	The postal (zip) code of the physical home address of the patient	N/A	Required if known
pt_address	String	The street name and number or P.O. box of the physical home address of the patient	N/A	Required if known
pt_address_city	String	Name of city of the physical home address of the patient	N/A	Required if known
pt_address_state	String	Name of state of the physical home address of the patient	N/A	Required if known
pt_address_period	Period	Time period address has been in use	N/A	Required if known
mrn	String	Medical record number	N/A	Required
first_name	String	The given name(s) of the patient	N/A	Required
last_name	String	The family name of the patient	N/A	Required
race	CodeableConcept	Text code for patient’s race	Code Set	Required
ethnicity	CodeableConcept	Text code patient’s ethnicity	Code Set	Required
physician_name	String	First and last name of physician submitting the request, e.g., Joe Doe	N/A	Required
physician_contact	String	Physician’s email	N/A	Required if known
physician_institution	String	Physician’s institution	N/A	Required if known
other_physician_name	String	First and last name of other physician submitting the request, e.g., Joe Doe	N/A	Required if known
other_physician_contact	String	Other physician’s email	N/A	Required if known
other_physician_institution	String	Other physician’s institution	N/A	Required if known
germline	CodeableConcept	Germline test performed	Code Set	Required
tissue	CodeableConcept	Tisssue NGS performed	Code Set	Required
liquid_biopsy	CodeableConcept	Liquid biopsy performed	Code Set	Required
other_mol_test	CodeableConcept	Other molecular testing performed	Code Set	Required
ngs_report_1	Attachment	Upload the first NGS report	N/A	Required
ngs_report_2	Attachment	Upload the second NGS report	N/A	Required
ngs_report_3	Attachment	Upload the third NGS report	N/A	Required
other_mol_test_report	Attachment	Upload any other molecular testing report	N/A	Required
question_for_mtb	String	A detailed question to the MTB group	N/A	Required
smoking_status	CodeableConcept	Text code for patient’s smoking status	SNOMED CT	Required
pack_years	Decimal	Number with one decimal place for pack-years	N/A	Required
other_exposures	CodeableConcept	Check one or more other exposures	Code Set	Required if known
ecog	CodeableConcept	Patient’s performance status according to the ECOG score	ECOG Performance Status Score	Required
ecogps_interpretation	CodeableConcept	A categorical assessment of the ECOG score	ECOG Performance Status Scale	Required if known
ecog_date_full	Date	Date the ECOG status was assessed (closest to the MTB review date)	N/A	Required
karnofsky	CodeableConcept	Patient’s performance status using the Karnofsky score	Code Set	Required
kps_interpretation	CodeableConcept	A categorical assessment of the Karnofsky score	Karnofsky Performance Status Scale	Required if known
karnofsky_date	Date	Date the Karnofsky status assessed (closest to the MTB review date)	N/A	Required
date_cur_pt_info	Date	Date of curation	N/A	Required if known
cur_by_pt_info	String	The name of the curator who modified the instrument	N/A	Required if known

Notes

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