Personal and Family History Profile

This profile inlcudes 17 data elements to capture cancer patient’s personal medical history of other neoplasms and family history. Five sub-profiles (not shown here) organize some of these elements into relevant groups (Personal History of Other Cancer, Family History, Family History>1st Degree, Family History>2nd Degree, Family History>3rd Degree).

Data Element	Data Type	Description	Terminology	Required
personal_cancer_history	Boolean	Personal history of cancer diagnoses, other than the current condition	N/A	Required
personal_cancer_dx	CodeableConcept	Prior cancer diagnosis	NCIt	Required
personal_cancer_age	Decimal	Patient’s age when diagnosed with a first cancer	N/A	Required
personal_other_cancer_dx	CodeableConcept	The diagnosis for a second cancer	NCIt	Required
personal_other_cancer_age	Decimal	Patient’s age when diagnosed with a second cancer	N/A	Required
fam_hx_cancer	CodeableConcept	Family history of cancer	Code Set	Required
no_first_deg_rel_cancer	Integer	Number of first-degree relatives (parents, siblings, children) with cancer	N/A	Required
first_deg_rel_under_50	Integer	Number of first-degree relatives (parents, siblings, children) with cancer before the age of 50	N/A	Required
fst_deg_cancer_types	CodeableConcept	List of cancer types in first-degree relatives	Code Set	Required
no_second_deg_rel_cancer	Integer	Number of second-degree relatives (grandparents, aunts and uncles, nieces and nephews, half-siblings, grandchildren) with cancer	N/A	Required
sec_deg_rel_under_50	Integer	Number of second-degree relatives (grandparents, aunts and uncles, nieces and nephews, half-siblings, grandchildren) with cancer before the age of 50	N/A	Required
snd_deg_cancer_types	CodeableConcept	List of cancer types in second-degree relatives	Code Set	Required
no_third_deg_rel_cancer	Integer	Number of third-degree relatives (first cousins, great aunts and uncles, great grandparents or great grandchildren) with cancer	N/A	Required
third_deg_rel_under_50	Integer	Number of third-degree relatives (first cousins, great aunts and uncles, great grandparents or great grandchildren) with cancer before the age of 50	N/A	Required
trd_deg_cancer_types	CodeableConcept	List of cancer types in third-degree relatives	Code Set	Required
date_cur_fhx	Date	Date of curation	N/A	Required if known
cur_by_fhx	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