CDE Detailed Report | NINDS Common Data Elements

Disease: Mitochondrial Disease
Sub-Domain: General Health History
CRF: Reproductive and Hormonal History

Displaying 1 - 38 of 38

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 / Guideline)	Sub Domain Name	Domain Name	Size	Input Restrictions	Min Value	Max Value	Measurement Type
C16171	Menstrual period first occurrence age value	MenstrualPrd1stOcurAgeVal	Youngest age the female participant/subject had a menstrual period, otherwise known as the age of menarche.	Youngest age the female participant/subject had a menstrual period, otherwise known as the age of menarche.	What age was your first period			Numeric Values	If YES is answered for having received a menstrual period, record the age first received in years	No references available	Adult;Pediatric	Supplemental	3.00	2013-06-11 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Free-Form Entry	0	100	year
C19803	Dual X-ray absorptiometry scanner performed indicator	DEXAScanPerfInd	Indicator of DEXA scan performed	Indicator of DEXA scan performed	Has a DXA scan ever been performed?	No;Yes;Unknown	No;Yes;Unknown	Alphanumeric			Adult;Pediatric	Supplemental	1.00	2015-02-05 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C10980	Childbearing potential indicator	ChldbrngPtntlInd	Indicator of whether the participant/subject is of childbearing potential.	Indicator of whether the participant/subject is of childbearing potential.	Are you of child-bearing potential	Yes;No;Unknown	Yes;No;Unknown	Alphanumeric	Choose one. No should be chosen if the participant/subject is a male.	No references available	Adult;Pediatric	Supplemental	3.00	2013-07-22 16:57:17.79	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C20013	Short stature diagnosis indicator	ShorStatureDiagInd	The indicator related to being diagnosed for short stature or height.	The indicator related to being diagnosed for short stature or height.	Have you ever been diagnosed with short stature?	No;Yes;Unknown	No;Yes;Unknown	Alphanumeric			Adult;Pediatric	Supplemental	1.00	2015-02-12 00:17:10.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C16172	Pregnant current indicator	PregCurntInd	Whether the female participant/subject is currently pregnant	Whether the female participant/subject is currently pregnant	Are you currently pregnant	Yes;No;Unknown	Yes;No;Unknown	Alphanumeric	Choose one for females	No references available	Adult;Pediatric	Supplemental	3.00	2013-06-11 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C20003	Hypoglycemia diagnosis indicator	HypoglycemDiagInd	The indicator related to having hypoglycemia or low blood sugar.	The indicator related to having hypoglycemia or low blood sugar.	Has there ever been clinical concern for hypoglycemia?	No;Yes;Unknown	No;Yes;Unknown	Alphanumeric			Adult;Pediatric	Supplemental	1.00	2015-02-11 23:35:02.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C10981	Birth control method type	BirthCntrlMethdTyp	The female participant's/subject's method of birth control	The female participant's/subject's method of birth control	Indicate all forms of contraception used	Oral contraceptives – combined pill;Oral contraceptives – progestin-only pill;Transdermal patch;Shot/injection;Vaginal ring;Implantable devices with hormone;Abstinence;None of these	Oral contraceptives – combined pill;Oral contraceptives – progestin-only pill;Transdermal patch;Shot/injection;Vaginal ring;Implantable devices with hormone;Abstinence;None of these	Alphanumeric	Only answered if "Is the subject of childbearing potential?" is answered Yes. Choose all that apply.	No references available	Adult;Pediatric	Supplemental	3.00	2013-07-22 16:57:17.79	Reproductive and Hormonal History	General Health History	Participant History and Family History		Multiple Pre-Defined Values Selected
C20014	Growth hormone deficiency diagnosis indicator	GrowthHorDefDiagInd	The indicator related to being diagnosed for deficiency in growth hormone.	The indicator related to being diagnosed for deficiency in growth hormone.	Have you ever been diagnosed with growth hormone deficiency?	No;Yes;Unknown	No;Yes;Unknown	Alphanumeric			Adult;Pediatric	Supplemental	1.00	2015-02-12 00:17:10.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C16173	Pregnancy estimated delivery date and time	PregEstDeliveryDateTime	The date and time (if applicable) the participant/subject is estimated to deliver the pregnancy	The date and time (if applicable) the participant/subject is estimated to deliver the pregnancy	Indicate your due date			Date or Date & Time	Only answered if "Yes" is answered for "Are you currently pregnant?" 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.).	No references available	Adult;Pediatric	Supplemental	3.00	2013-07-16 14:01:43.01	Reproductive and Hormonal History	General Health History	Participant History and Family History		Free-Form Entry
C20004	Hypoglycemia diagnosis type	HypoglycemDxTyp	The type related to having concern or diagnosis of hypoglycemia or low blood sugar.	The type related to having concern or diagnosis of hypoglycemia or low blood sugar.	Specify all that apply	Symptomatic;Laboratory blood glucose < 50 mg/dL;Post-prandial;Fasting;Symptoms improved with feeding	Symptomatic;Laboratory blood glucose < 50 mg/dL;Post-prandial;Fasting;Symptoms improved with feeding	Alphanumeric			Adult;Pediatric	Supplemental	1.00	2015-02-11 23:35:02.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C16008	Birth control indicator	BirthControlInd	Indicates if participant/subject uses birth control	Indicates if participant/subject uses birth control	Do you use any forms of contraception (periods may be regular or irregular)	Yes;No;Unknown	Yes;No;Unknown	Alphanumeric		No references available	Adult;Pediatric	Supplemental	3.00	2013-07-16 14:01:43.01	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C20015	Growth hormone treatment indicator	GrowthHorTreatInd	The indicator related to receiving growth hormone.	The indicator related to receiving growth hormone.	Did you receive growth hormone?	No;Yes;Unknown	No;Yes;Unknown	Alphanumeric			Adult;Pediatric	Supplemental	1.00	2015-02-12 00:17:10.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C16174	Menopause indicator	MenopauseInd	Indicates whether participant/subject is currently menopausal.	Indicates whether participant/subject is currently menopausal.	Do you believe you are currently experiencing menopause	Yes;No	Yes;No	Alphanumeric	Choose one for females	No references available	Adult;Pediatric	Supplemental	3.00	2013-06-11 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C20005	Hypoglycemia symptom diagnosis text	HypoglycemSymDxTxt	The free-text field to specify the symptom related to having concern or diagnosis of hypoglycemia or low blood sugar.	The free-text field to specify the symptom related to having concern or diagnosis of hypoglycemia or low blood sugar.	Specify			Alphanumeric			Adult;Pediatric	Supplemental	1.00	2015-02-11 23:35:02.0	Reproductive and Hormonal History	General Health History	Participant History and Family History	4000	Free-Form Entry
C16163	Hormone therapy name	HormoneTherapyNme	The name of the hormone therapy taken by the participant/subject	The name of the hormone therapy taken by the participant/subject.	Specify name of hormonal therapy taken			Alphanumeric	Only answered if "Yes" is answered for "Have you taken hormonal therapy?"	No references available	Adult;Pediatric	Supplemental	3.00	2013-06-11 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History	255	Free-Form Entry
C20016	Hormone-related syndrome type	HormoneRltdSyndmTyp	The type related to known hormone-related/endocrine syndromes or disorders	The type related to known hormone-related/endocrine syndromes or disorders	If Yes, indicate all that apply	Hyperthyroidism;Hypothyroidism;Diabetes;Polycystic ovary syndrome;Constitutional delay of growth and puberty;Hypogonadotropic hypogonadism;Cushing's syndrome;Hypoparathyroidism;Adrenal insufficiency;Dyslipidemia;Exocrine pancreatic insufficiency;Other, specify	Hyperthyroidism;Hypothyroidism;Diabetes;Polycystic ovary syndrome;Constitutional delay of growth and puberty;Hypogonadotropic hypogonadism;Cushing's syndrome;Hypoparathyroidism;Adrenal insufficiency;Dyslipidemia;Exocrine pancreatic insufficiency;Other, specify	Alphanumeric			Adult;Pediatric	Supplemental	1.00	2015-02-18 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C16175	Menstrual period last date	MenstrualPeriodLastDate	Date of the participant's/subject's last menstrual period	Date of the participant's/subject's last menstrual period	If Yes, indicate the approximate date of your last menstrual period			Date or Date & Time	Only answered if "Yes" is answered for "Do you believe you are currently experiencing menopause?" 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.).	No references available	Adult;Pediatric	Supplemental	3.00	2013-07-16 14:01:43.01	Reproductive and Hormonal History	General Health History	Participant History and Family History		Free-Form Entry
C20006	Bone fracture indicator	BoneFractInd	The indicator related to having a bone fracture.	The indicator related to having a bone fracture.	Have there even been bone fractures?	No;Yes;Unknown	No;Yes;Unknown	Alphanumeric			Adult;Pediatric	Supplemental	1.00	2015-02-11 23:48:46.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C16164	Hormonal therapy start date	HormonalTherapyStartDate	The date and time (if applicable and known) the participant/subject started hormonal therapy	Date (and time, if applicable and known) the participant/subject started hormonal therapy	Date Started			Date or Date & Time	Only answered if "Yes" is answered for "Have you taken hormonal therapy?" 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.).	No references available	Adult;Pediatric	Supplemental	3.00	2013-06-11 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Free-Form Entry
C20017	Hormone-related syndrome other text	HormoneRltdSyndmOTH	The free-text field related to other specify of known hormone-related/endocrine syndromes or disorders	The free-text field related to other specify of known hormone-related/endocrine syndromes or disorders	Other, specify			Alphanumeric			Adult;Pediatric	Supplemental	1.00	2015-02-18 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History	4000	Free-Form Entry
C16176	Hormone therapy indicator	HormoneTherapyInd	Indicates whether participant/subject has taken hormonal therapy	Indicates whether participant/subject has taken hormonal therapy	Have you taken hormonal therapy	Yes;No	Yes;No	Alphanumeric	Choose one for females	No references available	Adult;Pediatric	Supplemental	3.00	2013-06-11 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C20007	Bone fracture text	BoneFractTxt	The free-text field related to having a bone fracture.	The free-text field related to having a bone fracture.	Specify			Alphanumeric			Adult;Pediatric	Supplemental	1.00	2015-02-11 23:48:46.0	Reproductive and Hormonal History	General Health History	Participant History and Family History	4000	Free-Form Entry
C16165	Hormonal therapy stop date	HormonalTherapyStopDate	The date and time (if applicable and known) the participant/subject stopped hormonal therapy	Date (and time, if applicable and known) the participant/subject stopped hormonal therapy	Date Stopped			Date or Date & Time	Only answered if "Yes" is answered for "Have you taken hormonal therapy?" 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.).	No references available	Adult;Pediatric	Supplemental	3.00	2013-06-11 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Free-Form Entry
C20018	Hormone-related syndrome diagnosis age value	HormoneRltdSyndmDiagAgVal	The age value of participant/subject related to known hormone-related/endocrine syndromes or disorders	The age value of participant/subject related to known hormone-related/endocrine syndromes or disorders	Age at diagnosis			Numeric Values			Adult;Pediatric	Supplemental	1.00	2015-02-18 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Free-Form Entry	0	120	year
C16177	Post-menopausal indicator	PostMnpslInd	Indicates whether participant/subject is post-menopausal	Indicates whether participant/subject is post-menopausal	Are you post-menopausal	Yes;No;Unknown	Yes;No;Unknown	Alphanumeric	Choose one if female	No references available	Adult;Pediatric	Supplemental	3.00	2013-06-11 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C20008	Bone spine abnormal diagnosis indicator	BoneSpineAbDiagInd	The indicator related to having condition or abnormality of the spine or skeleton.	The indicator related to having condition or abnormality of the spine or skeleton.	Have you ever been diagnosed with any condition or abnormality of the spine or skeleton?	No;Yes;Unknown	No;Yes;Unknown	Alphanumeric			Adult;Pediatric	Supplemental	1.00	2015-02-11 23:35:02.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C16167	Given birth or fathered a child indicator	GivenBirthFartheredChildInd	Indicates whether participant/subject has ever given birth or fathered a child	Indicates whether participant/subject has ever given birth or fathered a child	Have you ever given birth or fathered a child	Yes;No;Unknown	Yes;No;Unknown	Alphanumeric	Choose one. Include current pregnancy and any pregnancies that resulted in early pregnancy loss, whether by choice or not. If "Yes" is answered, go to next question. If "No" is answered and participant/subject is a woman, skip to question 3. If "No" is answered and participant/subject is male, end form.	No references available	Adult;Pediatric	Supplemental	3.00	2013-06-11 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C16178	Post-menopausal cause type	PostMnpslCauseTyp	Cause or reason for the post-menopausal period in the female participant/subject	Cause or reason for the post-menopausal period in the female participant/subject	Indicate cause	Natural;Surgical (complete hysterectomy- ovaries and uterus removed);Surgical (partial hysterectomy-only uterus removed);Medications or chemotherapy	Natural;Surgical (complete hysterectomy- ovaries and uterus removed);Surgical (partial hysterectomy-only uterus removed);Medications or chemotherapy	Alphanumeric	Only answered if "Yes" is answered for "Are you post-menopausal?". Choose all that apply.	No references available	Adult;Pediatric	Supplemental	3.00	2013-06-11 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Multiple Pre-Defined Values Selected
C20009	Bone spine abnormal diagnosis text	BoneSpineAbDiagTxt	The free-text field related to having condition or abnormality of the spine or skeleton.	The free-text field related to having condition or abnormality of the spine or skeleton.	Specify			Alphanumeric			Adult;Pediatric	Supplemental	1.00	2015-02-11 23:35:02.0	Reproductive and Hormonal History	General Health History	Participant History and Family History	4000	Free-Form Entry
C16168	Pregnancy self or spouse number	PregSelfSpouseNum	Number of each pregnancy of participant/subject or participant/subject's partner.	Number of each pregnancy of participant/subject or participant/subject's partner.	#			Numeric Values	Numbers should be assigned in ascending numerical order, #1 being the most recent pregnancy.	No references available	Adult;Pediatric	Supplemental	3.00	2013-06-11 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Free-Form Entry
C16179	Post-menopausal surgery date	PostMnpslSurgDate	The date and time (if applicable and known) of the surgery that induced the post-menopausal period	Date (and time if applicable and known) of the surgery that induced the post-menopausal period	Date			Date or Date & Time	Only answered if "Surgical (complete hysterectomy - ovaries and uterus removed)" or "Surgical (partial hysterectomy - only uterus removed) are answered for "If yes, indicate cause" 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.).	No references available	Adult;Pediatric	Supplemental	3.00	2013-06-11 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Free-Form Entry
C20010	Dual X-ray absorptiometry scanner performed text	DEXAScanPerfTxt	The free-text field related to DEXA scan performed	The free-text field related to DEXA scan performed	Specify indication and results			Alphanumeric			Adult;Pediatric	Supplemental	1.00	2015-02-05 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History	4000	Free-Form Entry
C16169	Pregnancy outcome type	PregOutcmeTyp	Type of outcome of the pregnancy experienced by the participant/subject	Type of outcome of the pregnancy experienced by the participant/subject	Pregnancy Outcome	Currently pregnant;Live birth;Miscarriage;Therapeutic abortion or elective termination;Still birth	Currently pregnant;Live birth;Spontaneous abortion (<20 weeks);Therapeutic abortion or elective termination;Fetal death/stillbirth (>20 weeks)	Alphanumeric	Choose one. Answer for all pregnancies experienced by the participant/subject or the participant/subject's partner	No references available	Adult;Pediatric	Supplemental	3.00	2013-07-16 14:01:43.01	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C16180	Hormone-related syndrome indicator	HormoneRltdSyndmInd	Whether the participant/subject has known hormone-related/endocrine syndromes or disorders	Whether the participant/subject has known hormone-related/endocrine syndromes or disorders	Any other known hormone-related/endocrine syndromes or disorders	Yes;No;Unknown	Yes;No;Unknown	Alphanumeric	Choose one	No references available	Adult;Pediatric	Supplemental	3.00	2013-06-11 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C20011	Rickets diagnosis indicator	RicketsDiagInd	The indicator for diagnosis of rickets which is caused by vitamin D or calcium deficiency.	The indicator for diagnosis of rickets which is caused by vitamin D or calcium deficiency.	Have you ever been told that you have rickets or ever taken high dose vitamin D (>= 20,000 IU daily, or >= 50,000 IU weekly)?	No;Yes;Unknown	No;Yes;Unknown	Alphanumeric			Adult;Pediatric	Supplemental	1.00	2015-02-12 00:04:37.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C16170	Menstrual period occurrence indicator	MenstrualPrdOcurInd	Indicates whether participant/subject has ever had a menstrual period.	Indicates whether participant/subject has ever had a menstrual period.	Have you ever had a menstrual period	Yes;No	Yes;No	Alphanumeric	Choose one. If participant/subject is male, select "N/A - male".	No references available	Adult;Pediatric	Supplemental	3.00	2013-06-11 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Single Pre-Defined Value Selected
C16193	Pregnancy outcome date	PregOutcomeDate	The date and time (if applicable and known) of the outcome (i.e., delivery of live birth, miscarriage, etc.) of the pregnancy experienced by the participant/subject or the participant/subject's partner	Date (and time, if applicable and known) of the outcome (i.e., delivery of live birth, miscarriage, etc.) of the pregnancy experienced by the participant/subject or the participant/subject's partner	Date			Date or Date & Time	At a minimum record the month and year for each pregnancy. 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.).	No references available	Adult;Pediatric	Supplemental	3.00	2013-06-11 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Free-Form Entry
C20012	World Health Organization (WHO) Fracture Risk Assessment tool (FRAX) - fracture probability percentage value	WHOFRAXFractProbPerVal	The score as the 10 year probability of fracture related to the World Health Organization (WHO) Fracture Risk Assessment tool (FRAX) - score for adults between the ages of 40-90.	The score or 10 year probability of fracture related to the World Health Organization (WHO) Fracture Risk Assessment tool (FRAX) - score for adults between the ages of 40-90.	For adults between the ages of 40-90, World Health Organization (WHO) Fracture Risk Assessment tool (FRAX) score			Numeric Values			Adult	Supplemental	1.00	2015-02-18 00:00:00.0	Reproductive and Hormonal History	General Health History	Participant History and Family History		Free-Form Entry	0	100	percentage