Welcome | NINDS Common Data Elements



*Gender (Choose one): FORMCHECKBOX Male FORMCHECKBOX Female FORMCHECKBOX Unknown FORMCHECKBOX Unspecified FORMCHECKBOX Not Reported*Birth date: FORMCHECKBOX Not AvailableAge (derived value):XX (years) FORMCHECKBOX Not Available*Race category (Choose all that apply): FORMCHECKBOX American Indian or Alaska Native FORMCHECKBOX Asian FORMCHECKBOX Black or African-American FORMCHECKBOX Native Hawaiian or Other Pacific Islander FORMCHECKBOX White FORMCHECKBOX Unknown FORMCHECKBOX Not reported*Ethnicity (“X” ONLY one with which you MOST CLOSELY identify): FORMCHECKBOX Hispanic or Latino FORMCHECKBOX Not Hispanic or Latino FORMCHECKBOX Unknown FORMCHECKBOX Not ReportedMarital status: FORMCHECKBOX Never married FORMCHECKBOX Married FORMCHECKBOX Domestic partnership FORMCHECKBOX Divorced FORMCHECKBOX Separated FORMCHECKBOX Widowed FORMCHECKBOX UnknownHow many members are there in your household (including yourself): <enter value here, if known> FORMCHECKBOX UnknownArea of residence: FORMCHECKBOX A big city (population>250,000) FORMCHECKBOX A town/small city (population 10,000-250,000) FORMCHECKBOX A small town/village (500-10,000) FORMCHECKBOX Rural area (population<500) FORMCHECKBOX Unknown**Number of years of education: FORMCHECKBOX UnknownPrimary occupation (Choose one): FORMCHECKBOX Paid work (employed/self-employed, including military) FORMCHECKBOX Homemaker FORMCHECKBOX Student (including on the job training) FORMCHECKBOX Retired (disability pension) FORMCHECKBOX Retired (non-disability) FORMCHECKBOX Unpaid work (volunteer) FORMCHECKBOX Unemployed (none of the above) FORMCHECKBOX Other, Specify FORMCHECKBOX UnknownSecondary occupation (Choose all that apply): FORMCHECKBOX N/A FORMCHECKBOX Paid work (employed/self-employed, including military) FORMCHECKBOX Homemaker FORMCHECKBOX Student (including on the job training) FORMCHECKBOX Retired (disability pension) FORMCHECKBOX Retired (non-disability) FORMCHECKBOX Unpaid work (volunteer) FORMCHECKBOX Unemployed (none of the above) FORMCHECKBOX Other, Specify FORMCHECKBOX UnknownType of occupation (Paid employment): FORMCHECKBOX N/A FORMCHECKBOX Managers and officials FORMCHECKBOX Professionals FORMCHECKBOX Technicians and associate professionals (typically requiring a Bachelor degree or equivalent) FORMCHECKBOX Clerical support workers (secretary, clerk, office manager, book keeper) FORMCHECKBOX Service and sales workers (waiters, caretaker, shop assistants, insurance agents, sales manager) FORMCHECKBOX Skilled agricultural, forestry and fishery workers FORMCHECKBOX Craft and related trades workers (e.g. motor mechanic, printer, tool and die maker, electrician) FORMCHECKBOX Plant and machine operators and assemblers FORMCHECKBOX Elementary occupations (labourer, porter, unskilled workers) FORMCHECKBOX Armed forces occupation (officers, service personnel) FORMCHECKBOX Other, specify FORMCHECKBOX Unknown***Are you a citizen of (country)? FORMCHECKBOX Yes FORMCHECKBOX No FORMCHECKBOX Unknown***Birth country name through corresponding ISO 3166 1 alpha 2 code FORMCHECKBOX Unknown***Household income range (applicable for participants in the USA) FORMCHECKBOX Under $15,000 FORMCHECKBOX $15,000 to $24,999 FORMCHECKBOX $25,000 to $34,999 FORMCHECKBOX $35,000 to $49,999 FORMCHECKBOX $50,000 to $74,999 FORMCHECKBOX $75,000 to $99,999 FORMCHECKBOX $100,000 and over FORMCHECKBOX Refused to answer FORMCHECKBOX Unknown***How well do you manage with your current household income? FORMCHECKBOX Very well FORMCHECKBOX Rather well FORMCHECKBOX Adequately (neither well nor poorly) FORMCHECKBOX Rather poorly FORMCHECKBOX Very poorly FORMCHECKBOX Refused to answer FORMCHECKBOX Unknown FORMCHECKBOX Not ApplicableAdditional Pediatric-specific ElementsThese elements are recommended for pediatric studies.Genotypic sex (Choose one): FORMCHECKBOX XX FORMCHECKBOX XY FORMCHECKBOX XXX FORMCHECKBOX XXY FORMCHECKBOX XYY FORMCHECKBOX Unspecified FORMCHECKBOX Unknown FORMCHECKBOX Other, specify*Age (years):If less than 3 years of age (in months): **Level of educationWhat is the highest grade or level of school the participant/subject has completed or the highest degree obtained? (Choose one): FORMCHECKBOX Never attended/ Kindergarten only FORMCHECKBOX 1st Grade FORMCHECKBOX 2nd Grade FORMCHECKBOX 3rd Grade FORMCHECKBOX 4th Grade FORMCHECKBOX 5th Grade FORMCHECKBOX 6th Grade FORMCHECKBOX 7th Grade FORMCHECKBOX 8th Grade FORMCHECKBOX 9th Grade FORMCHECKBOX 10th Grade FORMCHECKBOX 11th Grade FORMCHECKBOX 12th Grade, no diploma FORMCHECKBOX High school graduate FORMCHECKBOX GED or equivalent FORMCHECKBOX Some college, no degree FORMCHECKBOX Associate degree: occupational, technical, or vocational program FORMCHECKBOX Associate degree: academic program FORMCHECKBOX Bachelor's degree (e.g., BA, AB, BS, BBA) FORMCHECKBOX Master's degree (e.g., MA, MS, MEng, MEd, MBA) FORMCHECKBOX Professional school degree (e.g., MD, DDS, DVM, JD) FORMCHECKBOX Doctoral degree (e.g., PhD, EdD) FORMCHECKBOX UnknownParticipant/subject school status FORMCHECKBOX Going to school FORMCHECKBOX On vacation from school (between grades) FORMCHECKBOX Neither FORMCHECKBOX UnknownPre-injury hand preference: (Hand participant/subject used predominantly, not necessarily he/she wrote with exclusively) FORMCHECKBOX Left hand FORMCHECKBOX Right hand FORMCHECKBOX Both hands FORMCHECKBOX UnknownCurrent hand preference: (Hand participant/subject uses predominantly, not necessarily he/she writes with exclusively) FORMCHECKBOX Left hand FORMCHECKBOX Right hand FORMCHECKBOX Both hands FORMCHECKBOX UnknownBirthplace (state, include country if outside of US):State:Country: Primary language (ISO 639-2 code) FORMCHECKBOX English (eng) FORMCHECKBOX French (fre) FORMCHECKBOX Spanish (spa) FORMCHECKBOX German (ger) FORMCHECKBOX Sign Languages (sgn) FORMCHECKBOX Other, specify ISO 639-2 code: FORMCHECKBOX Chinese languages (chi)**Primary caregiver’s level of education:What is the highest grade or level of school the participant’s/subject’s primary caregiver has completed or the highest degree obtained? (Choose one): FORMCHECKBOX Never attended/ Kindergarten only FORMCHECKBOX 1st Grade FORMCHECKBOX 2nd Grade FORMCHECKBOX 3rd Grade FORMCHECKBOX 4th Grade FORMCHECKBOX 5th Grade FORMCHECKBOX 6th Grade FORMCHECKBOX 7th Grade FORMCHECKBOX 8th Grade FORMCHECKBOX 9th Grade FORMCHECKBOX 10th Grade FORMCHECKBOX 11th Grade FORMCHECKBOX 12th Grade, no diploma FORMCHECKBOX High school graduate FORMCHECKBOX GED or equivalent FORMCHECKBOX Some college, no degree FORMCHECKBOX Associate degree: occupational, technical, or vocational program FORMCHECKBOX Associate degree: academic program FORMCHECKBOX Bachelor's degree (e.g., BA, AB, BS, BBA) FORMCHECKBOX Master's degree (e.g., MA, MS, MEng, MEd, MBA) FORMCHECKBOX Professional school degree (e.g., MD, DDS, DVM, JD) FORMCHECKBOX Doctoral degree (e.g., PhD, EdD) FORMCHECKBOX UnknownCaregiver marital status (choose one): FORMCHECKBOX Never married FORMCHECKBOX Married FORMCHECKBOX Domestic partnership FORMCHECKBOX Divorced FORMCHECKBOX Separated FORMCHECKBOX Widowed FORMCHECKBOX UnknownGeneral InstructionsThis form contains data elements that are collected to describe the demographics of the study population. The items are used to compare baseline characteristics among study groups and to identify confounding variables. All elements on this form are classified as Supplemental (unless otherwise specified) and should only be collected if the research team considers them appropriate for their study.For pediatric studies, the data elements on this form reflect child, not caregiver, characteristics (unless otherwise specified).As stated in 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, which are used below. NIH has chosen to continue the use of these definitions because they allow comparisons across many national data bases, especially national health data bases. Therefore, the racial and ethnic categories described below should be used as basic guidance, cognizant of the distinction based on cultural heritage. (NIH Guideline on the Inclusion of Women and Minorities as Subjects in Clinical Research)Responses to categories are obtained from self-report when possible.Birthplace – Record the state of birth. Include country if outside of the US. For country name, Choose one. It may be easier to record the full name of the country and code the data later using the ISO 3166-1 alpha-2 codes.Language spoken fluently text and corresponding ISO 639-2 codeLanguage written fluently text and corresponding ISO 639-2 codeSpecific InstructionsPlease see the Data Dictionary for definitions for each of the data elements included in this CRF Module.Responses to the demographic elements should be obtained from self-report when possible.Gender type – Self-reported gender of the participant/subject. Gender is the socially constructed identity of sex. Gender is equated with phenotypic sex. Gender may differ from the sex of an individual determined genetically. The NIH Guidelines on Inclusion of Women and Minorities as Subjects in Clinical Research: The Office of Management and Budget Directive No. 15 Unspecified is defined as Undifferentiated/Indeterminant/IntersexDate of birth – Record the date of birth to the level of precision knownEthnicity – Choose only one with which the participant/ subject most closely identifies.Race – Choose all that apply. Response is obtained by report of the participant/subject or caretaker. Collecting information on race may not be allowed in some countries for concerns related to discrimination. In other countries, however, these concerns are considered a reason for recording race in order to guarantee equal access to care. Investigators receiving funding from the US National Institutes of Health (NIH) are required to report the number of subjects enrolled on an annual basis using the racial categories listed.Type of occupation - International Standard Classification of Occupations 08, Major groupsReferenceUS Census Bureau*Element is classified as Core.**Element is classified as Supplemental – Highly Recommended for studies in the US.***Element is classified as Exploratory. ................
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