CDE Detailed Report
Disease: Stroke
Subdomain Name: Demographics
CRF: Demographics
Displaying 1 - 22 of 22
Subdomain Name: Demographics
CRF: Demographics
Displaying 1 - 22 of 22
| CDE ID | CDE Name | Variable Name | Definition | Short Description | Question Text | Permissible Values | Description | Data Type | Disease Specific Instructions | Disease Specific Reference | Population | Classification (e.g., Core) | Version Number | Version Date | CRF Name (CRF Module / Guidance) | Subdomain Name | Domain Name | Size | Input Restrictions | Min Value | Max Value | Measurement Type | External Id Loinc | External Id Snomed | External Id caDSR | External Id CDISC |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| C00031 | Race expanded category | RaceCat | Category of race(s) or region(s) the participant/subject most closely identifies with | Category of race(s) or region(s) the participant/subject most closely identifies with | Race expanded category | Black African American;Black African;Black Afro Caribbean;South/Central American Indian;North American Indian;Alaskan Native;Inuit;South Asian;Far Eastern Asian;Western Asian | Black African American (for OMB purposes, this value is considered to be part of Black or African-American);Black African (for OMB purposes, this value is considered to be part of Black or African-American);Black Afro Caribbean (for OMB purposes, this value is considered to be part of Black or African-American);South/Central American Indian (for OMB purposes, this value is considered to be part of American Indian or Alaska Native);North American Indian (for OMB purposes, this value is considered to be part of American Indian or Alaska Native);Alaskan Native (for OMB purposes, this value is considered to be part of American Indian or Alaska Native);Inuit (for OMB purposes, this value is considered to be part of American Indian or Alaska Native);South Asian (Indian subcontinent) (for OMB purposes, this value is considered to be part of Asian);Far Eastern Asian (e.g., China, Japan, Korea, etc.) (for OMB purposes, this value is considered to be part of Asian);Western Asian (e.g., Pakistan, Iraq, Iran) (for OMB purposes, this value is considered to be part of Asian) | Alphanumeric |
No instructions available |
No references available | Adult;Pediatric | Exploratory | 3.00 | 2013-07-22 16:57:17.79 | Demographics | Demographics | Participant Characteristics |
Multiple Pre-Defined Values Selected |
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| C52535 | Ethnicity pertinent intracranial aneurysm type | EthnPertinentUIAtype | Ethnicity type pertinent to unruptured intracranial aneurysms the participant/subject most closely identifies with | Ethnicity type pertinent to unruptured intracranial aneurysms the participant/subject most closely identifies with | Ethnicity pertinent to intracranial aneurysm | Japanese;Finnish;Eastern Asian;European;Persian;Arabic;Southeast Asian;South Asian;Pacific Islander;American Indian | Japanese;Finnish;Eastern Asian;European;Persian;Arabic (ara);Southeast Asian;South Asian (Indian subcontinent) (for OMB purposes, this value is considered to be part of Asian);Pacific Islander (for OMB purposes, this value is considered to be part of Native Hawaiian or Other Pacific Islander);American Indian | Alphanumeric |
No instructions available |
No references available | Adult;Pediatric | Exploratory | 3.00 | 2013-08-28 16:08:00.453 | Demographics | Demographics | Participant Characteristics |
Single Pre-Defined Value Selected |
2192217 | |||||||
| C58676 | Birth sex assigned type | BirthSexAssignTyp | Self-reported phenotypic sex of participant/subject, assigned at birth | Self-reported phenotypic sex of participant/subject, assigned at birt | Sex assigned at birth | Male;Female;Intersex;Unknown;Other, specify | Male;Female;Intersex;Unknown;Other, specify | Alphanumeric |
No instructions available |
No references available | Adult;Pediatric | Core | 1.00 | 2020-01-07 14:00:16.0 | Demographics | Demographics | Participant Characteristics |
Single Pre-Defined Value Selected |
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| C58677 | Gender identity type | GenderIdTyp | Gender identity self-identified by the subject/participant. Gender type may or may not match sex assigned at birth | Gender identity self-identified by the subject/participant. Gender type may or may not match sex assigned at birt | Gender Identity | Male;Female;Unknown;Other, specify | Male;Female;Unknown;Other, specify | Alphanumeric |
No instructions available |
No references available | Adult;Pediatric | Core | 1.00 | 2020-01-07 14:20:24.0 | Demographics | Demographics | Participant Characteristics |
Single Pre-Defined Value Selected |
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| C58780 | Birth sex assigned type other text | BirthSexAssignTypOTH | The free-text field related to 'Birth sex assigned type', specifying other text | The free-text field related to 'Birth sex assigned type', specifying other tex | Other, specify | Alphanumeric |
No instructions available |
No references available | Adult;Pediatric | Supplemental | 1.00 | 2020-05-12 10:47:54.0 | Demographics | Demographics | Participant Characteristics | 4000 |
Free-Form Entry |
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| C58781 | Gender identity type other text | GenderIdTypOTH | The free-text field related to 'Gender identity type', specifying other text | The free-text field related to 'Gender identity type', specifying other tex | Other, specify | Alphanumeric |
No instructions available |
No references available | Adult;Pediatric | Supplemental | 1.00 | 2020-05-12 10:50:12.0 | Demographics | Demographics | Participant Characteristics | 4000 |
Free-Form Entry |
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| C58782 | Race expanded maternal category | RaceExpMatrnlCat | Category of race(s) or region(s) the participant/subject's mother most closely identifies with | Category of race(s) or region(s) the participant/subject's mother most closely identifies with | Maternal race expanded category | South Asian;Far Eastern Asian;Western Asian;Black African American;Black African;Black Afro Caribbean;South/Central American Indian;North American Indian;Alaskan Native;Inuit | South Asian (Indian subcontinent) (for OMB purposes, this value is considered to be part of Asian);Far Eastern Asian (e.g., China, Japan, Korea, etc.) (for OMB purposes, this value is considered to be part of Asian);Western Asian (e.g., Pakistan, Iraq, Iran) (for OMB purposes, this value is considered to be part of Asian);Black African American (for OMB purposes, this value is considered to be part of Black or African-American);Black African (for OMB purposes, this value is considered to be part of Black or African-American);Black Afro Caribbean (for OMB purposes, this value is considered to be part of Black or African-American);South/Central American Indian (for OMB purposes, this value is considered to be part of American Indian or Alaska Native);North American Indian (for OMB purposes, this value is considered to be part of American Indian or Alaska Native);Alaskan Native (for OMB purposes, this value is considered to be part of American Indian or Alaska Native);Inuit (for OMB purposes, this value is considered to be part of American Indian or Alaska Native) | Alphanumeric |
This element is recommended for pediatric stroke studies. |
No references available | Pediatric | Exploratory | 1.00 | 2020-05-12 10:51:54.0 | Demographics | Demographics | Participant Characteristics |
Multiple Pre-Defined Values Selected |
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| C58783 | Race expanded paternal category | RaceExpPatrnlCat | Category of race(s) or region(s) the participant/subject's father most closely identifies with | Category of race(s) or region(s) the participant/subject's father most closely identifies with | Paternal race expanded category | South Asian;Far Eastern Asian;Western Asian;Black African American;Black African;Black Afro Caribbean;South/Central American Indian;North American Indian;Alaskan Native;Inuit | South Asian (Indian subcontinent) (for OMB purposes, this value is considered to be part of Asian);Far Eastern Asian (e.g., China, Japan, Korea, etc.) (for OMB purposes, this value is considered to be part of Asian);Western Asian (e.g., Pakistan, Iraq, Iran) (for OMB purposes, this value is considered to be part of Asian);Black African American (for OMB purposes, this value is considered to be part of Black or African-American);Black African (for OMB purposes, this value is considered to be part of Black or African-American);Black Afro Caribbean (for OMB purposes, this value is considered to be part of Black or African-American);South/Central American Indian (for OMB purposes, this value is considered to be part of American Indian or Alaska Native);North American Indian (for OMB purposes, this value is considered to be part of American Indian or Alaska Native);Alaskan Native (for OMB purposes, this value is considered to be part of American Indian or Alaska Native);Inuit (for OMB purposes, this value is considered to be part of American Indian or Alaska Native) | Alphanumeric |
This element is recommended for pediatric stroke studies. |
No references available | Adult;Pediatric | Exploratory | 1.00 | 2020-05-12 12:48:50.0 | Demographics | Demographics | Participant Characteristics |
Multiple Pre-Defined Values Selected |
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| C00022 | Ethnicity USA maternal category | EthnUSAMatrnlCat | Ethnicity the participant/subject's mother most closely identifies with | Ethnicity the participant/subject's mother most closely identifies with | Maternal ethnicity | Unknown;Not reported;Hispanic or Latino;Not Hispanic or Latino | Unknown;Not reported;A person of Cuban, Mexican, Puerto Rican, South or Central American, or other Spanish culture or origin, regardless of race. The term "Spanish origin" can also be used in addition to "Hispanic or Latino.";A person not meeting the definition for Hispanic or Latino. | Alphanumeric |
This element is recommended for pediatric stroke studies. Choose only one with which the parent most closely identifies. Ethnicity should be self-reported. |
The NIH Guidelines on Inclusion of Women and Minorities as Subjects in Clinical Research: The Office of Management and Budget Directive No. 15 defines the minimum standard of basic racial and ethnic categories. (http://grants.nih.gov/grants/funding/women_min/guidelines_update.htm) Collection of Race and Ethnicity Data in Clinical Trials (FDA, September 2005 - http://www.fda.gov/RegulatoryInformation/Guidances/ucm126340.htm) | Pediatric | Supplemental | 3.00 | 2013-07-25 08:54:08.2 | Demographics | Demographics | Participant Characteristics |
Single Pre-Defined Value Selected |
2192217;3182162 | |||||||
| C00026 | Language spoken Fluent text | LangSpokeFluentTxt | Text for each language that the participant/subject speaks fluently | Text for each language that the participant/subject speaks fluently | Other, specify | Alphanumeric |
Choose all that apply |
No references available | Adult;Pediatric | Supplemental | 3.00 | 2013-07-20 10:21:25.65 | Demographics | Demographics | Participant Characteristics | 255 |
Free-Form Entry |
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| C00028 | Language spoken fluent ISO code | LangSpokeFluentISOCode | Code (ISO 639-2)for each language that the participant/subject speaks fluently | Code (ISO 639-2)for each language that the participant/subject speaks fluently | Language(s) fully fluent | English (eng);Spanish (spa);American Sign Language (sgn);Chinese languages (Chi);French/Creole (cpf);German (ger);Other specify | English (eng);Spanish (spa);American Sign Language (sgn);Chinese languages (Chi);French/Creole (cpf);German (ger);Other specify | Alphanumeric |
Choose all that apply. It may be easier to record the full name of the language and code the data later using the ISO 639-2 codes. |
ISO 639-2 language codes (http://www.loc.gov/standards/iso639-2/php/code_list.php) | Adult;Pediatric | Supplemental | 3.00 | 2013-07-20 10:21:25.65 | Demographics | Demographics | Participant Characteristics |
Multiple Pre-Defined Values Selected |
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| C00030 | Race USA category | RaceUSACat | The patient's self declared racial origination, independent of ethnic origination, using OMB approved categories | The patient's self declared racial origination, independent of ethnic origination, using OMB approved categori | Race | American Indian or Alaska Native;Asian;Black or African-American;Native Hawaiian or Other Pacific Islander;White;Unknown;Not Reported | A person having origins in any of the original peoples of North and South America (including Central America) , and who maintains tribal affiliation or community attachment.;A person having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent including, for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam.;A person having origins in any of the black racial groups of Africa. Terms such as "Haitian" can be used in addition to "Black or African American.";A person having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands.;A person having origins in any of the original peoples of Europe, the Middle East, or North Africa.;Could not be determined or unsure;Not provided or unavailable | Alphanumeric |
Choose all those with which the participant/ subject identifies. Race should be reported by the subject or caretaker. |
The NIH Guidelines on Inclusion of Women and Minorities as Subjects in Clinical Research: The Office of Management and Budget (OMB) Directive No. 15 defines the minimum standard of basic racial and ethnic categories. (http://grants.nih.gov/grants/funding/women_min/guidelines_update.htm) Collection of Race and Ethnicity Data in Clinical Trials (FDA, October 2016 - https://www.fda.gov/regulatory-information/search-fda-guidance-documents/collection-race-and-ethnicity-data-clinical-trials) | Adult;Pediatric | Core | 3.00 | 2013-07-25 08:54:08.2 | Demographics | Demographics | Participant Characteristics |
Multiple Pre-Defined Values Selected |
2192199 | |||||||
| C00032 | Race USA paternal category | RaceUSAPatrnlCat | Race(s) the participant/subject's father most closely identifies with | Race(s) the participant/subject's father most closely identifies with | Paternal race | American Indian or Alaska Native;Asian;Black or African-American;Native Hawaiian or Other Pacific Islander;White;Unknown;Not Reported | A person having origins in any of the original peoples of North and South America (including Central America) , and who maintains tribal affiliation or community attachment.;A person having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent including, for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam.;A person having origins in any of the black racial groups of Africa. Terms such as "Haitian" can be used in addition to "Black or African American.";A person having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands.;A person having origins in any of the original peoples of Europe, the Middle East, or North Africa.;Could not be determined or unsure;Not provided or unavailable | Alphanumeric |
This element is recommended for pediatric stroke studies. Choose all those with which the parent identifies. Race should be self-reported. |
The NIH Guidelines on Inclusion of Women and Minorities as Subjects in Clinical Research: The Office of Management and Budget (OMB) Directive No. 15 defines the minimum standard of basic racial and ethnic categories. (http://grants.nih.gov/grants/funding/women_min/guidelines_update.htm) Collection of Race and Ethnicity Data in Clinical Trials (FDA, September 2005 - http://www.fda.gov/RegulatoryInformation/Guidances/ucm126340.htm) | Pediatric | Supplemental | 3.00 | 2013-07-25 08:54:08.2 | Demographics | Demographics | Participant Characteristics |
Multiple Pre-Defined Values Selected |
3182269;2192199, 3182197 | |||||||
| C00033 | Race USA maternal category | RaceUSAMatrnlCat | Race(s) the participant/subject's mother most closely identifies with | Race(s) the participant/subject's mother most closely identifies with | Maternal race | American Indian or Alaska Native;Asian;Black or African-American;Native Hawaiian or Other Pacific Islander;White;Unknown;Not Reported | A person having origins in any of the original peoples of North and South America (including Central America) , and who maintains tribal affiliation or community attachment.;A person having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent including, for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam.;A person having origins in any of the black racial groups of Africa. Terms such as "Haitian" can be used in addition to "Black or African American.";A person having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands.;A person having origins in any of the original peoples of Europe, the Middle East, or North Africa.;Could not be determined or unsure;Not provided or unavailable | Alphanumeric |
This element is recommended for pediatric stroke studies. Choose all those with which the parent identifies. Race should be self-reported. |
The NIH Guidelines on Inclusion of Women and Minorities as Subjects in Clinical Research: The Office of Management and Budget (OMB) Directive No. 15 defines the minimum standard of basic racial and ethnic categories. (http://grants.nih.gov/grants/funding/women_min/guidelines_update.htm) Collection of Race and Ethnicity Data in Clinical Trials (FDA, September 2005 - http://www.fda.gov/RegulatoryInformation/Guidances/ucm126340.htm) | Pediatric | Supplemental | 3.00 | 2013-07-25 08:54:08.2 | Demographics | Demographics | Participant Characteristics |
Multiple Pre-Defined Values Selected |
3182197;2192199 | |||||||
| C10676 | Country of residence code | CntryResdnceISOCode | Code (ISO 3166-1 alpha-2) for the country where the participant/subject currently lives | Code (ISO 3166-1 alpha-2) for the country where the participant/subject currently live | Country | US;CA;GB;MX;AU;Other, specify;RU;CN;IN;JP;DE;FR;Other European;Other Asian;FI | USA (US);Canada (CA);United Kingdom (GB);Mexico (MX);Australia (AU);Other, specify;Russia (RU);China (CN);India (IN);Japan (JP);Germany (DE);France (FR);Other European;Other Asian;Finland (FI) | Alphanumeric |
Choose only one country which the subject/participant currently lives. If the country code is not included on the form and therefore the country is written-in under 'Other, specify' then code the data later using ISO 3166-1 alpha-2 codes. |
ISO 3166-1 alpha-2 codes (http://www.iso.org/iso/iso_3166_code_lists) | Adult;Pediatric | Exploratory | 3.00 | 2013-07-11 15:03:49.2 | Demographics | Demographics | Participant Characteristics |
Single Pre-Defined Value Selected |
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| C10677 | ZIP partial code | ZIPPartialCode | First three digits of the zip code where the participant/subject currently lives | First three digits of the zip code where the participant/subject currently live | Zip/Postal Code | Alphanumeric |
This is an optional field, if this information is not provided enter 000. |
NINDS Genetics Repository, Required Clinical Data Elements for subjects with Cerebrovascular Disease - http://ccr.coriell.org/Sections/Collections/NINDS/Cerebrovascular.aspx?PgId=190&coll=ND | Adult;Pediatric | Supplemental | 3.00 | 2013-07-16 14:01:43.01 | Demographics | Demographics | Participant Characteristics | 255 |
Free-Form Entry |
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| C00007 | Birth date | BirthDate | Date (and time, if applicable and known) the participant/subject was born | Date (and time, if applicable and known) the participant/subject was born | Date of birth | Date or Date & Time |
Record the date/time according to the ISO 8601, the International Standard for the representation of dates and times (http://www.iso.org/iso/home.html). The date/time should be recorded to the level of granularity known (e.g., year, year and month, complete date plus hours and minutes, etc.). Recording date of birth will give the most detailed information required for calculation of age and is recommended as first choice. However, in some studies recording date of birth may elicit discussions on a potential violation of privacy legislation and specifically HIPAA regulations. In these cases, the calculated age should be recorded. |
Management and prognosis of severe traumatic brain injury: Age. J Neurotrauma. 2000;17:573-581.; Mushkudiani NA, Engel DC, Steyerberg EW, et al. Prognostic value of demographic characteristics in traumatic brain injury: results from the IMPACT study. J Neurotrauma. Feb 2007;24(2):259-69. Pediatric-specific reference(s): Anderson V, Catroppa C, Morse S, Haritou F, Rosenfeld J (2005) Functional plasticity or vulnerability after early brain injury. Pediatrics 116:1374-1382. ISO 8601http://www.iso.org/iso/home.html | Adult;Pediatric | Core | 3.00 | 2013-07-25 08:54:08.2 | Demographics | Demographics | Participant Characteristics |
Free-Form Entry |
793 | |||||||||
| C14123 | Country of residence name | CntryResdnceName | Country where the participant/subject currently lives | Country where the participant/subject currently live | Country of residence | Alphanumeric |
No instructions available |
No references available | Adult;Pediatric | Exploratory | 3.00 | 2013-06-21 00:00:00.0 | Demographics | Demographics | Participant Characteristics | 255 |
Free-Form Entry |
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| C00020 | Ethnicity USA category | EthnUSACat | Category of ethnicity the participant/subject most closely identifies with | Category of ethnicity the participant/subject most closely identifies with | Ethnicity | Hispanic or Latino;Not Hispanic or Latino;Unknown;Not reported;Other, specify | A person of Cuban, Mexican, Puerto Rican, South or Central American, or other Spanish culture or origin, regardless of race. The term "Spanish origin" can also be used in addition to "Hispanic or Latino.";A person not meeting the definition for Hispanic or Latino.;Could not be determined or unsure;Not reported;Other, specify | Alphanumeric |
Choose only one with which the participant/ subject most closely identifies. Ethnicity should be reported by the subject or caretaker. |
The NIH Guidelines on Inclusion of Women and Minorities as Subjects in Clinical Research: The Office of Management and Budget Directive No. 15 defines the minimum standard of basic racial and ethnic categories. (http://grants.nih.gov/grants/funding/women_min/guidelines_update.htm) Collection of Race and Ethnicity Data in Clinical Trials (FDA, October 2016 - https://www.fda.gov/regulatory-information/search-fda-guidance-documents/collection-race-and-ethnicity-data-clinical-trials) | Adult;Pediatric | Core | 3.00 | 2013-08-28 16:08:00.453 | Demographics | Demographics | Participant Characteristics |
Single Pre-Defined Value Selected |
2192217 | |||||||
| C14124 | Social security number | SocialSecurityNum | A nine-digit number issued to U.S. citizens, permanent residents, and temporary (working) residents under section 205(c)(2) of the Social Security Act, codified as 42 U.S.C. § 405(c)(2). The number is issued to an individual by the Social Security Administration, an independent agency of the United States government | A nine-digit number issued to U.S. citizens, permanent residents, and temporary (working) residents under section 205(c)(2) of the Social Security Act, codified as 42 U.S.C. § 405(c)(2). The number is issued to an individual by the Social Security Administration, an independent agency of the United States governmen | Social security number | Numeric Values |
Providing this information is entirely voluntary and the participant/ subject may refuse. This information must be kept confidential according to the Privacy Act of 1974, and must only be used for research purposes. The preferred format for recording SSN is _ _ _ - _ _ - _ _ _ _ |
Framingham Heart Study | Adult;Pediatric | Supplemental | 3.00 | 2013-07-16 14:01:43.01 | Demographics | Demographics | Participant Characteristics |
Free-Form Entry |
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| C00021 | Ethnicity USA paternal category | EthnUSAPatrnlCat | Ethnicity the participant/subject's father most closely identifies with | Ethnicity the participant/subject's father most closely identifies with | Paternal ethnicity | Unknown;Not reported;Hispanic or Latino;Not Hispanic or Latino | Unknown;Not reported;A person of Cuban, Mexican, Puerto Rican, South or Central American, or other Spanish culture or origin, regardless of race. The term "Spanish origin" can also be used in addition to "Hispanic or Latino.";A person not meeting the definition for Hispanic or Latino. | Alphanumeric |
This element is recommended for pediatric stroke studies. Choose only one with which the parent most closely identifies. Ethnicity should be self-reported. |
The NIH Guidelines on Inclusion of Women and Minorities as Subjects in Clinical Research: The Office of Management and Budget Directive No. 15 defines the minimum standard of basic racial and ethnic categories. (http://grants.nih.gov/grants/funding/women_min/guidelines_update.htm) Collection of Race and Ethnicity Data in Clinical Trials (FDA, September 2005 - http://www.fda.gov/RegulatoryInformation/Guidances/ucm126340.htm) | Pediatric | Supplemental | 3.00 | 2013-07-25 08:54:08.2 | Demographics | Demographics | Participant Characteristics |
Single Pre-Defined Value Selected |
2182266;3182162;2192217 | |||||||
| C18806 | Country of residence other text | CntryResdnceISOOTH | The free-text field related to 'Country of residence code' specifying other text. Code (ISO 3166-1 alpha-2) for the country where the participant/subject currently lives | The free-text field related to 'Country of residence code' specifying other text. Code (ISO 3166-1 alpha-2) for the country where the participant/subject currently live | Other, specify | Alphanumeric |
Choose only one country which the subject/participant currently lives. If the country code is not included on the form and therefore the country is written-in under 'Other, specify' then code the data later using ISO 3166-1 alpha-2 codes. |
ISO 3166-1 alpha-2 codes (http://www.iso.org/iso/iso_3166_code_lists) | Adult;Pediatric | Exploratory | 3.00 | 2013-07-11 15:03:49.2 | Demographics | Demographics | Participant Characteristics | 4000 |
Free-Form Entry |
