Module: family-history

Module Contents

individual
- 1.CENTER_NO
- 2.PERSON_ID (*PK)
- 3.PERSON_CID
- 4.MOTHER_ID
- 5.FATHER_ID
- 6.TWIN_ID
- 7.TWIN_TYPE
- 8.SEX
- 9.VS
- 10.LIVEDATE
- 11.LIVEDATESRC
- 12.DTHDATE
- 13.DTHDATESRC
- 14.AGE_DEATH
- 15.AGE_DEATH_EST
- 16.DOB
- 17.BIREST
- 18.INDIVSRC
- 19.BLOOD
- 20.BUCCAL_SALIVA
- 21.EPI_Q_COLON
- 22.COLON_1ST_FU
- 23.COLON_2ND_FU
- 24.COLON_3RD_FU
- 25.COLON_4TH_FU
- 26.COLON_5TH_FU
- 26.DIET_Q_HI
- 27.DIET_Q_AUS
- 28.CLINICAL_COLON
- 29.RACE_ETHNIC_SOURCE
- 30.ADDITIONAL_RACE
- 31.ADDITIONAL_ETHNICITY

CENTER_NO

number (2,0)

Required:true

Center Identification Number

Allowable Values
11	Sinai Health Systems (formerly Cancer Care Ontario)
12	University of Southern California Consortium (USCC)
13	University of Melbourne
14	University of Hawaii Cancer Center
15	Mayo Clinic
16	Fred Hutch, Seattle
17	University of California at San Francisco (UCSF) (formerly CPIC, originally Northern California (NCCC))

2	PERSON_ID (*PK)	string (12)	Required:true
	Number that uniquely identifies an individual. Consists of concatenation of CENTER_NO (2 digit; digits 1-2) + (10 digit local unique individual id; digits 3-12). The 10 digit individual number component should be right justified, zero filled. Ex: Individual Id 98765 from Australia Colon Center should be: 130000098765. *This field is the primary key for the table.

3	PERSON_CID	string (30)	Required:false
	The external person ID (or concatenated set of IDs) that is local to the submitting center.

4	MOTHER_ID	string (12)	Required:false
	Identification number (PERSON_ID) of mother.

5	FATHER_ID	string (12)	Required:false
	Identification number (PERSON_ID) of father.

6	TWIN_ID	string (12)	Required:false
	Identification number (PERSON_ID) of the corresponding twin. Example: Persons 3 and 4 are twins. Person 3 = 02000008763 Person 4 = 02000008764 Example: Persons 3, 4, and 5 are triplets. Code as follows: Person 3 = 02000008763 Person 4 = 02000008764 Person 5 = 02000008765

TWIN_TYPE

number (1,0)

Required:false

Type of twin.

Allowable Values
1	Monozygous
2	Dizygous
9	Twin, type unknown

SEX

number (1,0)

Required:true

Sex of the individual.

Allowable Values
1	Male
2	Female
3	Other
9	Unknown

number (1,0)

Required:true

Vital Status of individual.

Allowable Values
1	Alive
2	Dead
9	Unknown

LIVEDATE

string (8)

Required:true

The most recent date a subject is known to be living. This is the last date the subject is known to be alive. There are multiple sources of information that can be used to obtain this date. Acceptable sources are listed in LIVEDATESRC. Upon notification of the death of the subject, the LIVEDATE should remain unchanged and VS should be updated to 2-dead and DTHDATE and DTHDATESRC, AGE_DEATH and AGE_DEATH_EST populated.

Date Value Check
The date must follow to the following format: Format YYYYMMDD. Must consist of valid date. Components of date should be right justified and zero filled. MM = 01 – 12, 88, 99 DD = 01 – 31, 88, 99 YYYY = Minimum year – system date year, 8888, 9999 Use 88, 8888 for not currently known, in progress to obtain information. Use 99, 9999 for not known. If century is known, but year is unknown then give an estimate of year or code YYYY = 9999. If MM = 99 then DD must = 99. If century is known, but year is unknown then give an estimate of year or code YYYY = 9999. If YYYY = 9999 then MM and DD must = 99. The following special parameters are used:
YYYY	1700 (Minimum year) – system date year, 8888, 9999
MM	01 – 12, 88, 99
DD	01 – 31, 88, 99

Allowable Values
YYYY	Minimum year – system date year, 8888, 9999
MM	01 – 12, 88, 99
DD	01 – 31, 88, 99
If YYYY	9999 then MM and DD must
If MM	99 then DD must

LIVEDATESRC

number (2,0)

Required:true

Source of information for LIVEDATE

Allowable Values
1	Self representation either by conducting a study activity in person, by telephone, or by mail. These could include completing a survey, signing a study document, providing a blood sample, etc
2	Relative (or Respondent) report that a subject is living
3	Linkage with national death indices, such as the NDI and NDI+, where the OMISSION of a subject presumes he/she is living (consensus advised).
4	Linkage with state death indices, such as through the health department where the OMISSION of a subject presumes he/she is living (consensus advised)
5	Linkage with another information source that reports an activity that indicates the subject is living, such as current use of social security benefits, credit report
6	Hospital record, medical file that reports contact with or a procedure performed on subject.
7	SEER, which reports the last date they know the subject is known to be alive.
8	State Cancer registry, which reports the last date they know the subject to be alive.
9	Other, for example specialized genealogy
99	Unknown

DTHDATE

string (8)

Required:false

The date of death. There are multiple sources of information that can be used to obtain this date. Acceptable sources are listed in DTHDATESRC.

Date Value Check
The date must follow to the following format: Format YYYYMMDD. Must consist of valid date. Components of date should be right justified and zero filled. MM = 01 – 12, 88, 99 DD = 01 – 31, 88, 99 YYYY = Minimum year – system date year, 8888, 9999 Use 88, 8888 for not currently known, in progress to obtain information. Use 99, 9999 for not known. If century is known, but year is unknown then give an estimate of year or code YYYY = 9999. If MM = 99 then DD must = 99. If century is known, but year is unknown then give an estimate of year or code YYYY = 9999. If YYYY = 9999 then MM and DD must = 99. The following special parameters are used:
YYYY	1700 (Minimum year) – system date year, 8888, 9999
MM	01 – 12, 88, 99
DD	01 – 31, 88, 99

Error Description
If VS is 2 then DTHDATE must not be null
Error Description
If VS is not 2 then DTHDATE must be null
Error Description
Date of death must be equal to or after date of birth
Error Description
LIVEDATE must be less DTHDATE
This check will pass under the following conditions: DTHDATE is valid date{ 1700 (Minimum year) – system date year, 8888, 9999:YYYY }
This check will pass under the following conditions: DTHDATE is valid date{ 01 – 12, 88, 99:MM }
This check will pass under the following conditions: DTHDATE is valid date{ 01 – 31, 88, 99:DD }

Allowable Values
YYYY	Minimum year – system date year, 8888, 9999
MM	01 – 12, 88, 99
DD	01 – 31, 88, 99
If YYYY	9999 then MM and DD must
If MM	99 then DD must

DTHDATESRC

number (2,0)

Required:false

Source of information reporting subject is deceased

Allowable Values
1	Relative (or Respondent) report of subject death
2	Linkage with national death indices (e.g., NDI, NDI+)
3	Linkage with another information source that reports termination of services due to death (e.g., social security benefits, medicare, medicaid).
4	Hospital record, medical file that reports
5	SEER
6	State Cancer registry
7	State Death Indices (e.g., through the health department)
8	Death certificate
9	Obituary
10	Other (e.g., specialized genealogy research)
99	Unknown

Error Description
If VS is not 2 then DTHDATESRC must be null
Error Description
If VS is 2 then DTHDATESRC must not be null
This special value check will pass under the following conditions: DTHDATESRC in {1,2,3,4,5,6,7,8,9,10,99}

AGE_DEATH

number (3,0)

Required:false

Age at death (De-Identified)

Allowable Values
996	Less than 20
997	90 or over
998	Less than 1 year
999	Unknown

AGE_DEATH_EST

number (1,0)

Required:false

Accuracy of age of death.

Allowable Values
1	Exact
2	Within 1 year
3	Within 1+ to 5 years
4	Within 5+ to 10 years
5	10 or more years
9	Unknown

DOB

string (8)

Required:true

Date of birth.

Date Value Check
The date must follow to the following format: Format YYYYMMDD. Must consist of valid date. Components of date should be right justified and zero filled. MM = 01 – 12, 88, 99 DD = 01 – 31, 88, 99 YYYY = Minimum year – system date year, 8888, 9999 Use 88, 8888 for not currently known, in progress to obtain information. Use 99, 9999 for not known. If century is known, but year is unknown then give an estimate of year or code YYYY = 9999. If MM = 99 then DD must = 99. If century is known, but year is unknown then give an estimate of year or code YYYY = 9999. If YYYY = 9999 then MM and DD must = 99. The following special parameters are used:
YYYY	1700 (Minimum year) – system date year, 8888, 9999
MM	01 – 12, 88, 99
DD	01 – 31, 88, 99

Error Description
must be a valid date of format YYYYMMDD
This check will pass under the following conditions: DOB is valid date{ 1700 (Minimum year) – system date year, 8888, 9999:YYYY }
This check will pass under the following conditions: DOB is valid date{ 01 – 12, 88, 99:MM }
This check will pass under the following conditions: DOB is valid date{ 01 – 31, 88, 99:DD }

Allowable Values
YYYY	Minimum year – system date year, 8888, 9999
MM	01 – 12, 88, 99
DD	01 – 31, 88, 99
If YYYY	9999 then MM and DD must
If MM	99 then DD must

BIREST

number (1,0)

Required:true

Accuracy of date of birth.

Allowable Values
1	Exact
2	Within 1 year
3	Within 1+ to 5 years
4	Within 5+ to 10 years
5	10 or more years
9	Unknown

INDIVSRC

number (1,0)

Required:true

Source of information for individual family member.

Allowable Values
0	Self
1	1st degree relative
2	2nd degree relative
3	Other relative
4	Other
5	Dummy record (i.e. dummy spouse or parent)
9	Unknown

BLOOD

number (1,0)

Required:true

Status of blood specimen.

Allowable Values
0	Not needed / not applicable
1	Needed, but can’t get (e.g. deceased, overseas, etc.)
2	Needed, Pending
3	Blood received
4	Refusal from patient
6	Sample lost or destroyed

BUCCAL_SALIVA

number (1,0)

Required:false

Status of buccal/saliva specimen.

Allowable Values
0	Not needed, not applicable
1	Needed, but cannot get (e.g. deceased, overseas, etc.)
2	Needed, pending
3	Buccal_Saliva received
4	Refusal from patient
6	Sample lost or destroyed

EPI_Q_COLON

number (1,0)

Required:false

Status of colon epidemiology questionnaire.

Allowable Values
0	Not needed / not applicable
1	Needed, not requested yet
2	Questionnaire requested, pending
3	Questionnaire received, completed personally
4	Questionnaire completed by proxy
5	Refused
6	Needed but can’t get (i.e. language, disability, etc.)
7	Deceased

COLON_1ST_FU

number (1,0)

Required:false

Status of the first Colon Follow Up questionnaire administered after the Baseline questionnaire.

Allowable Values
0	Reserved for non-participants only (did not complete BL Epi).
1	Needed and not due or not requested yet.
2	QNR requested, pending completion.
3	Questionnaire received
5	Refused (unable to complete or contact but will re-attempted)
6	Permanently lost (e.g., withdrew, refused, medically incapable etc. Will not reattempt)
7	Deceased
8	Ineligible/Not selected for follow-up/Retired

COLON_2ND_FU

number (1,0)

Required:false

Status of the second Colon Follow Up questionnaire administered after the Baseline questionnaire.

Allowable Values
null	All subsequently due FU’s preceded by codes 1, 2, 5.
-1	Participant was permanently eliminated in a previous FU (6, 7, 8). Applies to FU2 or later only.
0	Reserved for non-participants only (did not complete BL Epi).
1	Needed and not due or not requested yet.
2	QNR requested, pending completion.
3	Questionnaire received
5	Refused (unable to complete or contact but will re-attempted)
6	Permanently lost (e.g., withdrew, refused, medically incapable etc. Will not reattempt)
7	Deceased
8	Ineligible/Not selected for follow-up/Retired

COLON_3RD_FU

number (1,0)

Required:false

Status of the third Colon Follow Up questionnaire administered after the Baseline questionnaire.

Allowable Values
null	All subsequently due FU’s preceded by codes 1, 2, 5.
-1	Participant was permanently eliminated in a previous FU (6, 7, 8). Applies to FU2 or later only.
0	Reserved for non-participants only (did not complete BL Epi).
1	Needed and not due or not requested yet.
2	QNR requested, pending completion.
3	Questionnaire received
5	Refused (unable to complete or contact but will re-attempted)
6	Permanently lost (e.g., withdrew, refused, medically incapable etc. Will not reattempt)
7	Deceased
8	Ineligible/Not selected for follow-up/Retired

COLON_4TH_FU

number (1,0)

Required:false

Status of the fourth Colon Follow Up questionnaire administered after the Baseline questionnaire.

Allowable Values
null	All subsequently due FU’s preceded by codes 1, 2, 5.
-1	Participant was permanently eliminated in a previous FU (6, 7, 8). Applies to FU2 or later only.
0	Reserved for non-participants only (did not complete BL Epi).
1	Needed and not due or not requested yet.
2	QNR requested, pending completion.
3	Questionnaire received
5	Refused (unable to complete or contact but will re-attempted)
6	Permanently lost (e.g., withdrew, refused, medically incapable etc. Will not reattempt)
7	Deceased
8	Ineligible/Not selected for follow-up/Retired

COLON_5TH_FU

number (1,0)

Required:false

Status of the fifth Colon Follow Up questionnaire administered after the Baseline questionnaire.

Allowable Values
null	All subsequently due FU’s preceded by codes 1, 2, 5.
-1	Participant was permanently eliminated in a previous FU (6, 7, 8). Applies to FU2 or later only.
0	Reserved for non-participants only (did not complete BL Epi).
1	Needed and not due or not requested yet.
2	QNR requested, pending completion.
3	Questionnaire received
5	Refused (unable to complete or contact but will re-attempted)
6	Permanently lost (e.g., withdrew, refused, medically incapable etc. Will not reattempt)
7	Deceased
8	Ineligible/Not selected for follow-up/Retired

DIET_Q_HI

number (1,0)

Required:false

Status of Hawaiian Diet Questionnaire.

Allowable Values
0	Not needed / not applicable
1	Needed, not requested yet
2	Questionnaire requested, pending
3	Questionnaire received
5	Refused
6	Needed but can’t get (i.e. language, disability, etc.)
7	Deceased

DIET_Q_AUS

number (1,0)

Required:false

Status of Australian diet questionnaire.

Allowable Values
0	Not needed / not applicable
1	Needed, not requested yet
2	Questionnaire requested, pending
3	Questionnaire received
5	Refused
6	Needed but can’t get (i.e. language, disability, etc.)
7	Deceased

CLINICAL_COLON

number (1,0)

Required:false

Consent for clinical data collected in clinical treatment module.

Allowable Values
0	Not needed / not applicable
1	Needed, can’t get (hospital has no records/ correct hospital cannot be identified)
2	Needed, pending consent
3	Records received
4	Consent received records pending
5	Refused- consent
6	Needed- but can’t consent (lost contact/deceased, no proxy etc.)

RACE_ETHNIC_SOURCE

number (1,0)

Required:false

Source of race/ethnicity information.

Allowable Values
1	Epidemiology questionnaire self report
2	Other questionnaire self report
3	Epidemiology questionnaire proxy
4	Other questionnaire proxy
5	Cancer registry
6	Other external source

ADDITIONAL_RACE

number (2,0)

Required:false

To include reported RACE from source(s) other than BL Epi or FU Epi questionnaires. This includes race reported via other questionnaires such as family history questionnaire, information provided during blood/saliva collection, verbal information, etc.

Allowable Values
1	Caucasian/White
2	Black or African American (except Africans or persons of Caribbean origin)
3	Latino, Hispanic, Mexican American, Mexican, Cuban or Puerto Rican
4	Japanese (includes Okinawan)
5	Chinese
6	Filipino, Malay or Indonesian
7	Korean
8	Southeast Asian, except Chinese (such as Vietnamese, Laotian, Thai, Hmong, Kampuchean)
9	South Asian (such as Indian, Pakistani, Sri Lankan)
10	Native American (such as Inuit, Aleutian, First Nations Person)
11	Polynesian (such as Hawaiian, Maori, Samoan, Tongan, Tahitian, Cook Islander)
12	Micronesian (such as Chamorro, Guamanian)
13	Australian Aboriginal
14	Melanesian (such as Fijian, New Guinean)
15	Caribbean Black (such as Jamaican, Trinidadian, Tobagonian)
16	Central/South American (such as Costa Rican, Salvadorian, Columbian, Brazilian)
17	Black African
18	North African (such as Egyptian, Algerian, Moroccan)
19	Middle Eastern (such as Iranian, Lebanese, Kuwaiti, Saudi)
20	Asian, NOS (Not otherwise specified)
97	More than one race
98	Other
99	Unknown

ADDITIONAL_ETHNICITY

number (1,0)

Required:false

To include reported ethnicity from source(s) other than BL Epi or FU Epi questionnaire. This includes ethnicity reported via other questionnaires such as family history questionnaire, information provided during blood/saliva collection, verbal information, etc. Response to question “Do you consider yourself to be Hispanic/Latino? “

Allowable Values
1	Yes
2	No
8	Not Asked
9	Don’t Know/Refused