CDE Detailed Report
Disease: Unruptured Cerebral Aneurysms and Subarachnoid Hemorrhage
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CRF: Demographics
Displaying 1 - 12 of 12
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CRF: Demographics
Displaying 1 - 12 of 12
| 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 |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| 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 categories | 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. |
Collection of Race and Ethnicity Data in Clinical Trials (FDA, September 2005 - http://www.fda.gov/RegulatoryInformation/Guidances/ucm126340.htm) <br />Jorde LB and Wooding SP. Genetic variation, classification and "race". Nature Genetics. 2004;36(11):S28-S33. Bhopal R and Donaldson L. White, European, Western, Caucasian, or What? Inappropriate labeling in Research on Race, Ethnicity, and Health. Amer J of Publ Health. 1998;88:1303-1307. NCI CDE Browser Public ID = 2192199 | Adult;Pediatric | Core | 3.1 | 10/16/2024 8:51:18 AM | Demographics | [php] | [php_1] |
Multiple Pre-Defined Values Selected |
2192199 | |||||||
| 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 | Not reported;Other;Unknown;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;White North American;White South American;White European;White Middle Eastern;White African;White Australian;Hawaiian;Pacific Islander | Not reported;Other;Unknown;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);White North American (for OMB purposes, this value is considered to be part of White);White South American (for OMB purposes, this value is considered to be part of White);White European (for OMB purposes, this value is considered to be part of White);White Middle Eastern (for OMB purposes, this value is considered to be part of White);White African (for OMB purposes, this value is considered to be part of White);White Australian (for OMB purposes, this value is considered to be part of White);Hawaiian (for OMB purposes, this value is considered to be part of Native Hawaiian or Other Pacific Islander);Pacific Islander (for OMB purposes, this value is considered to be part of Native Hawaiian or Other Pacific Islander) | Alphanumeric | Adult;Pediatric | Supplemental | 3.00 | 2013-07-22 16:57:17.79 | Demographics | [php] | [php_1] |
Multiple Pre-Defined Values Selected |
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| C00035 | Gender type | GenderTyp | Self-reported gender of the participant/subject | Self-reported gender of the participant/subjec | Gender | Alphanumeric |
This element should be collected along with the other elements of the Sophia Classification. |
Govaert P, Ramenghi L, Taal R, de Vries L, Deveber G. Diagnosis of perinatal stroke I: definitions, differential diagnosis and registration. Acta Paediatr. 2009 Oct;98(10):1556-67. | Adult;Pediatric | Core | 3.00 | 2013-08-28 16:08:00.453 | Demographics | [php] | [php_1] |
Single Pre-Defined Value Selected |
2200604 | |||||||||
| 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 of residence: | 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) |
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 | [php] | [php_1] |
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 | Exploratory | 3.00 | 2013-07-16 14:01:43.01 | Demographics | [php] | [php_1] | 255 |
Free-Form Entry |
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| C14123 | Country of residence name | CntryResdnceName | Country where the participant/subject currently lives | Country where the participant/subject currently live | Country of residence name: | Alphanumeric | No references available | Adult;Pediatric | Exploratory | 3.00 | 2013-06-21 00:00:00.0 | Demographics | [php] | [php_1] | 255 |
Free-Form Entry |
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| 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 | Exploratory | 3.00 | 2013-07-16 14:01:43.01 | Demographics | [php] | [php_1] |
Free-Form Entry |
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| C17396 | Sex genotype type | SexGenotypTyp | The difference between male and female, based upon the interactions between genes and between the genotype and the environment. Genotype is identified based on the individual's reproductive organs and functions assigned by chromosomal complement | Sex chromosomes of the participant/subject based upon genotyping | Genotypic sex | XX;XY;XXX;XYY;XXY;Other, specify;Unknown;Unspecified | XX;XY;XXX;XYY;XXY;Other, specify;Unknown;Undifferentiated/Indeterminant/Intersex | Alphanumeric | Adult;Pediatric | Core | 3.10 | 2018-07-26 00:00:00.0 | Demographics | [php] | [php_1] |
Single Pre-Defined Value Selected |
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| 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) |
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 | [php] | [php_1] | 4000 |
Free-Form Entry |
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| C00007 | Birth date | BirthDate | Date (and time, if applicable and known) the participant was born | Date (and time, if applicable and known) the participant 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 8601 - http://www.iso.org/iso/iso_catalogue.htm | Adult;Pediatric | Core | 3.1 | 10/16/2024 8:51:14 AM | Demographics | [php] | [php_1] |
Free-Form Entry |
793 | |||||||||
| 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 | Adult;Pediatric | Exploratory | 3.00 | 2013-08-28 16:08:00.453 | Demographics | [php] | [php_1] |
Single Pre-Defined Value Selected |
2192217 | |||||||||
| C00020 | Ethnicity USA category | EthnUSACat | Category of ethnicity the participant most closely identifies with | Category of ethnicity the participant 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)<br />Collection of Race and Ethnicity Data in Clinical Trials (FDA, September 2005 - http://www.fda.gov/RegulatoryInformation/Guidances/ucm126340.htm) | Adult;Pediatric | Core | 3.1 | 10/16/2024 8:51:17 AM | Demographics | [php] | [php_1] |
Single Pre-Defined Value Selected |
2192217 |
