Informatie:
Fout:
ID
43760
Beschrijving
NINDS Common Data Elements (General Health History Friedreich's Ataxia) Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.
Link
https://www.commondataelements.ninds.nih.gov/
Trefwoorden
Versies (2)
- 29-04-16 29-04-16 -
- 20-09-21 20-09-21 -
Geüploaded op
20 september 2021
DOI
Voor een aanvraag inloggen.
Licentie
Creative Commons BY-NC 3.0
Model Commentaren :
Hier kunt u commentaar leveren op het model. U kunt de tekstballonnen bij de itemgroepen en items gebruiken om er specifiek commentaar op te geven.
Itemgroep Commentaren voor :
Item Commentaren voor :
U moet ingelogd zijn om formulieren te downloaden. AUB inloggen of schrijf u gratis in.
NINDS CDE General Health History Friedreich's Ataxia
General Health History
- StudyEvent: ODM
Similar models
General Health History
- StudyEvent: ODM
Name
Type
Description | Question | Decode (Coded Value)
Datatype
Alias
Assessment Date
Item
Date of evaluation
date
C2985720 (UMLS CUI [1])
Study ID
Item
Study ID
text
C2826693 (UMLS CUI [1])
Study site
Item
Study site name
text
C2825164 (UMLS CUI [1])
Subject ID
Item
Subject ID
text
C2348585 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Age started tobacco use
Item
Age started tobacco use
integer
C2827019 (UMLS CUI [1])
Age stopped tobacco use
Item
Age stopped tobacco use
integer
C2827008 (UMLS CUI [1])
Ongoing tobacco use
Item
Ongoing tobacco use
boolean
C0154517 (UMLS CUI [1])
CL Item
Filtered cigarettes(Answer next Q) (1)
CL Item
Cigars (2)
CL Item
Other, specify (3)
CL Item
Non-filtered cigarettes(Answer next Q) (4)
CL Item
Pipes (5)
CL Item
Low tar cigarettes(Answer next Q) (6)
CL Item
Chewing tobacco (7)
Tobacco use type
Item
Type of tobacco used: if other type, please specify
text
C3166496 (UMLS CUI [1])
Item
Average number of cigarettes smoked per day
integer
C1608325 (UMLS CUI [1])
CL Item
Less than one cigarette per day (1)
CL Item
1 cigarette per day (2)
CL Item
2 to 5 cigarettes per day (3)
CL Item
6 to 15 cigarettes per day(about ½ pack) (4)
CL Item
16 to 25 cigarettes per day (about 1 pack) (5)
CL Item
26 to 35 cigarettes per day (about 1 ½ packs) (6)
CL Item
More than 35 cigarettes per day (about 2 packs or more) (7)
CL Item
Unknown (8)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Age started drinking
Item
Age started drinking
integer
C2827019 (UMLS CUI [1])
Age quit drinking
Item
Age quit drinking
integer
C2827008 (UMLS CUI [1])
Ongoing use
Item
Ongoing use
boolean
C0038586 (UMLS CUI [1,1])
C0549178 (UMLS CUI [1,2])
C0549178 (UMLS CUI [1,2])
Item
How often do you have a drink containing alcohol?
integer
C2826656 (UMLS CUI [1])
Code List
How often do you have a drink containing alcohol?
CL Item
Monthly or less (1)
CL Item
2 - 4 times/ month (2)
CL Item
2 - 3 times/ week (3)
CL Item
4 or more times/ week (4)
CL Item
Unknown(Skip if Question 1 and Question 2 are both NO) (5)
Item
How many alcoholic drinks do you have on a typical day when you are drinking?
integer
C0551555 (UMLS CUI [1])
Code List
How many alcoholic drinks do you have on a typical day when you are drinking?
CL Item
1 or 2 (1)
CL Item
3 or 4 (2)
CL Item
5 or 6 (3)
CL Item
7, 8, or 9 (4)
CL Item
10 or more (5)
CL Item
Unknown (Skip if Q1 and Q2 are both NO) (6)
Item
How often do you have six or more drinks on one occasion?
integer
C3698589 (UMLS CUI [1])
CL Item
Never (1)
CL Item
Less than monthly (2)
CL Item
Monthly (3)
CL Item
Weekly (4)
CL Item
Daily or almost daily (5)
CL Item
Unknown (6)
Item
Have you ever been hospitalized for an alcohol-related problem?
integer
C0184666 (UMLS CUI [1,1])
C0848950 (UMLS CUI [1,2])
C0848950 (UMLS CUI [1,2])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Current drug user: if yes, please specify illicit drug type(s) used
integer
C0038586 (UMLS CUI [1])
CL Item
Sedatives (e.g., sleeping pills, barbiturates, Seconal, Quaaludes, or Chloral Hydrate) (1)
CL Item
Tranquilizers or anti-anxiety drugs (e.g., Valium®, Librium, muscle relaxants, or Zanax) (2)
CL Item
Painkillers (e.g., Codeine, Darvon, Percodan, Dilaudid, or Demerol) (3)
CL Item
Stimulants (e.g., Preludin, Benzedrine, Methadrine, uppers, or speed) (4)
CL Item
Marijuana, hash, THC, or grass (5)
CL Item
Cocaine or crack (6)
CL Item
Hallucinogens (e.g., Ecstasy, LSD, mescaline, psilocybin, PCP, angel dust, or peyote) (7)
CL Item
Inhalants or Solvents (e.g., amyl nitrate, nitrous oxide, glue, tolune, or gasoline) (8)
CL Item
Heroin (9)
CL Item
Other, specify: (e.g., Methadone, Elavil, steroids,Thorazine, or Haldol) (10)
Drug use history
Item
Current user: if other illicit drug(s), please specify
text
C0038586 (UMLS CUI [1])
Item
Does the participants first degree blood relative have a history of Ataxia
integer
C0004134 (UMLS CUI [1,1])
C0241889 (UMLS CUI [1,2])
C0241889 (UMLS CUI [1,2])
Code List
Does the participants first degree blood relative have a history of Ataxia
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Relationship of Family Member to Participant/ Subject (Choose all that apply)
integer
C0015608 (UMLS CUI [1])
Code List
Relationship of Family Member to Participant/ Subject (Choose all that apply)
CL Item
Mother (1)
CL Item
Father (2)
CL Item
Sibling (3)
CL Item
Half-Sibling (4)
CL Item
Child (5)
Item
Does the participant/subject’s first degree blood relatives have a history of Cardiomyopathy?
integer
C0241889 (UMLS CUI [1,1])
C0878544 (UMLS CUI [1,2])
C0878544 (UMLS CUI [1,2])
Code List
Does the participant/subject’s first degree blood relatives have a history of Cardiomyopathy?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Relationship of Family Member to Participant/ Subject (Choose all that apply)
integer
C0015608 (UMLS CUI [1])
Code List
Relationship of Family Member to Participant/ Subject (Choose all that apply)
CL Item
Mother (1)
CL Item
Father (2)
CL Item
Sibling (3)
CL Item
Half-Sibling (4)
CL Item
Child (5)
Item
Does the participant/subject’s first degree blood relatives have a history of Diabetes mellitus
integer
C0241889 (UMLS CUI [1,1])
C0011849 (UMLS CUI [1,2])
C0011849 (UMLS CUI [1,2])
Code List
Does the participant/subject’s first degree blood relatives have a history of Diabetes mellitus
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Relationship of Family Member to Participant/ Subject (Choose all that apply)
integer
C0015608 (UMLS CUI [1])
Code List
Relationship of Family Member to Participant/ Subject (Choose all that apply)
CL Item
Mother (1)
CL Item
Father (2)
CL Item
Sibling (3)
CL Item
Half-Sibling (4)
CL Item
Child (5)
Item
Does the participant/subject’s first degree blood relatives have a history of Friedreich’s Ataxia
integer
C0241889 (UMLS CUI [1,1])
C0016719 (UMLS CUI [1,2])
C0016719 (UMLS CUI [1,2])
Code List
Does the participant/subject’s first degree blood relatives have a history of Friedreich’s Ataxia
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Relationship of Family Member to Participant/ Subject (Choose all that apply)
integer
C0015608 (UMLS CUI [1])
Code List
Relationship of Family Member to Participant/ Subject (Choose all that apply)
CL Item
Mother (1)
CL Item
Father (2)
CL Item
Sibling (3)
CL Item
Half-Sibling (4)
CL Item
Child (5)
Item
Does the participant/subject’s first degree blood relatives have a history of Mitochondrial Disease
integer
C0241889 (UMLS CUI [1,1])
C0751651 (UMLS CUI [1,2])
C0751651 (UMLS CUI [1,2])
Code List
Does the participant/subject’s first degree blood relatives have a history of Mitochondrial Disease
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Relationship of Family Member to Participant/ Subject (Choose all that apply)
integer
C0015608 (UMLS CUI [1])
Code List
Relationship of Family Member to Participant/ Subject (Choose all that apply)
CL Item
Mother (1)
CL Item
Father (2)
CL Item
Sibling (3)
CL Item
Half-Sibling (4)
CL Item
Child (5)
Item
Indicate how the medical/family history information was obtained
integer
C0683836 (UMLS CUI [1])
CL Item
Participant/Subject (1)
CL Item
Family, specify relation: (2)
CL Item
Friend (3)
CL Item
Physician (4)
CL Item
Chart/Medical record (5)
CL Item
Other, specify (6)
Information source
Item
If other information source, please specify
text
C0683836 (UMLS CUI [1])
Item
If the medical/ family history information was not obtained from the participant/subject, indicate the reason(s) the information were obtained from alternate source(s
integer
C0683836 (UMLS CUI [1,1])
C0566251 (UMLS CUI [1,2])
C0566251 (UMLS CUI [1,2])
Code List
If the medical/ family history information was not obtained from the participant/subject, indicate the reason(s) the information were obtained from alternate source(s
CL Item
Dementia (1)
CL Item
Aphasia (2)
CL Item
Other cognitive impairment (3)
CL Item
Not fluent in examiner’s language (4)
CL Item
Poor historian (5)
CL Item
Too young (6)
CL Item
Other, specify (7)
Reason for alternate information source
Item
If other reason for alternate information source, please specify
text
C0683836 (UMLS CUI [1,1])
C0566251 (UMLS CUI [1,2])
C0566251 (UMLS CUI [1,2])
Item
Overall assessment of the reliability of the medical/family history information obtained:
integer
C0035036 (UMLS CUI [1])
Code List
Overall assessment of the reliability of the medical/family history information obtained:
CL Item
Definitely reliable (1)
CL Item
Probably reliable (2)
CL Item
Not reliable (3)
Date
Item
Date Medical History Taken
date
C0011008 (UMLS CUI [1])
Constitutional symptoms
Item
Have you experienced problems with constitutional symptoms in the past?
boolean
C0009812 (UMLS CUI [1])
Constitutional symptoms
Item
Please specify the constitutional symptom you experienced. If there´s more than one, please describe one be one.
text
C0009812 (UMLS CUI [1])
Start date
Item
Start date of constitutional symptom
date
C0011008 (UMLS CUI [1])
End date
Item
End date of constitutional symptom
date
C0011008 (UMLS CUI [1])
Ongoing
Item
Is the symptom persistent?
boolean
C0549178 (UMLS CUI [1])
Eye problems
Item
Have you experienced problems with your eyes in the past?
boolean
C0262477 (UMLS CUI [1])
Eye problems
Item
Please specify the eye problems you experienced. If there´s more than one, please describe one be one.
text
C0262477 (UMLS CUI [1])
Start date
Item
Start date of eye problems
date
C0011008 (UMLS CUI [1])
End date
Item
End date of eye problems
date
C0011008 (UMLS CUI [1])
Ongoing
Item
Is the symptom persistent?
boolean
C0549178 (UMLS CUI [1])
Otorhinolaryngologic conditions
Item
Have you experienced ENT or mouth problems in the past?
boolean
C0029896 (UMLS CUI [1])
Otorhinolaryngologic conditions
Item
Please specify the otorhinolaryngologic conditions or problems with your mouth you experienced. If there´s more than one, please describe one be one.
text
C0029896 (UMLS CUI [1])
Start date
Item
Start date of your ENT or mouth problems
date
C0011008 (UMLS CUI [1])
End date
Item
End date of your ENT or mouth problems
date
C0011008 (UMLS CUI [1])
Ongoing
Item
Is the symptom persistent?
boolean
C0549178 (UMLS CUI [1])
Cardiovascular diseases
Item
Have you experienced problems with your cardiovascular system in the past?
boolean
C0007222 (UMLS CUI [1])
Cardiovascular Diseases
Item
Please specify the problems you experienced with your cardiovascular system. If there´s more than one, describe it one by one.
text
C0007222 (UMLS CUI [1])
Start date
Item
Start date of your cardiovascular problems
date
C0011008 (UMLS CUI [1])
End date
Item
End date of your cardiovascular problems
date
C0011008 (UMLS CUI [1])
Ongoing
Item
Is the symptom persistent?
boolean
C0549178 (UMLS CUI [1])
Respiratory disorders
Item
Have you experienced respiratory problems in the past?
boolean
C0035204 (UMLS CUI [1])
Respiration disorders
Item
Please specify the respiratory problems you experienced. If there´s more than one, describe it one by one.
text
C0035204 (UMLS CUI [1])
Start date
Item
Start date of your respiratory problems
date
C0011008 (UMLS CUI [1])
End date
Item
End date of your respiratory problems
date
C0011008 (UMLS CUI [1])
Ongoing
Item
Is the symptom persistent?
boolean
C0549178 (UMLS CUI [1])
Gastrointestinal system
Item
Have you experienced gastrointestinal problems in the past?
boolean
C0012240 (UMLS CUI [1])
Gastrointestinal system
Item
Please specify the gastrointestinal problem you experienced. If there´s more than one, describe it one by one
text
C0012240 (UMLS CUI [1])
Start date
Item
Start date of your gastrointestinal problems
date
C0011008 (UMLS CUI [1])
End date
Item
End date of your gastrointestinal problems
date
C0011008 (UMLS CUI [1])
Ongoing
Item
Is the symptom persistent?
boolean
C0549178 (UMLS CUI [1])
Genitourinary system
Item
Have you experienced problems with your genitourinary system in the past?
boolean
C0042066 (UMLS CUI [1])
Genitourinary system
Item
Please specify the problems with your genitourinary system. If there´s more than one, describe it one by one.
text
C0042066 (UMLS CUI [1])
Start date
Item
Start date of your genitourinary problems
date
C0011008 (UMLS CUI [1])
End date
Item
End date of your genitourinary problems
date
C0011008 (UMLS CUI [1])
Ongoing
Item
Is the symptom persistent?
boolean
C0549178 (UMLS CUI [1])
Musculoskeletal system
Item
Have you experienced problems with musculoskeletal system in the past?
boolean
C0026860 (UMLS CUI [1])
Musculoskeletal System
Item
Please specify the problem with your musculoskeletal system. If there´s more than one, describe it one by one.
text
C0026860 (UMLS CUI [1])
Start date
Item
Start date of your musculoskeletal problem
date
C0011008 (UMLS CUI [1])
End date
Item
End date of your musculoskeletal problem
date
C0011008 (UMLS CUI [1])
Ongoing
Item
Is the symptom persistent?
boolean
C0549178 (UMLS CUI [1])
Integumentary system
Item
Have you experienced problems with your skin or your breast in the past?
boolean
C0037267 (UMLS CUI [1])
Integumentary system
Item
Please specify the problems with your integumentary system you experienced. If there´s more than one, describe it one by one.
text
C0037267 (UMLS CUI [1])
Start date
Item
Start date of your problems with the integumentary system
date
C0011008 (UMLS CUI [1])
End date
Item
End date of your problems with the integumentary system
date
C0011008 (UMLS CUI [1])
Ongoing
Item
Is the symptom persistent?
boolean
C0549178 (UMLS CUI [1])
Neurological problems
Item
Have you experienced neurological problems with in the past?
boolean
C0221571 (UMLS CUI [1])
Neurological problems
Item
Please specify the neurological problems you experienced. If there´s more than one, please describe it one be one.
text
C0221571 (UMLS CUI [1])
Start date
Item
Start date of the neurological problem
date
C0011008 (UMLS CUI [1])
End date
Item
End date of the neurological problem
date
C0011008 (UMLS CUI [1])
Ongoing
Item
Is the symptom persistent?
boolean
C0549178 (UMLS CUI [1])
Mental disorders
Item
Have you experienced problems with your mental health in the past?
boolean
C0004936 (UMLS CUI [1])
Mental disorders
Item
Please specify the mental problem you experienced. If there´s more than one, please describe it one by one.
text
C0004936 (UMLS CUI [1])
Start date
Item
Start date of your mental illness
date
C0011008 (UMLS CUI [1])
End date
Item
End date of your mental illness
date
C0011008 (UMLS CUI [1])
Ongoing
Item
Is the symptom persistent?
boolean
C0549178 (UMLS CUI [1])
Endocrine system diseases
Item
Have you experienced problems with your endocrine system in the past?
boolean
C0014130 (UMLS CUI [1])
Endocrine system diseases
Item
Please specify the endocrine system disease you experienced. If there´s more than one,please describe it one by one
text
C0014130 (UMLS CUI [1])
Start date
Item
Start date of the endocrine system disease
date
C0011008 (UMLS CUI [1])
End date
Item
End date of the endocrine system disease
date
C0011008 (UMLS CUI [1])
Ongoing
Item
Is the symptom persistent?
boolean
C0549178 (UMLS CUI [1])
Hematological disease
Item
Have you experienced problems with diseases of blood and bloodforming organs in the past?
boolean
C0018939 (UMLS CUI [1])
Hematological disease
Item
Please specify the disease of blood and bloodforming organs you experienced. If there´s more than one,please describe it one by one.
text
C0018939 (UMLS CUI [1])
Start date
Item
Start date of your problems with the blood or bloodforming system
date
C0011008 (UMLS CUI [1])
End date
Item
End date of the problems with your blood or bloodforming system
date
C0011008 (UMLS CUI [1])
Ongoing
Item
Is the symptom persistent?
boolean
C0549178 (UMLS CUI [1])
Lymphatic disease
Item
Have you experienced problems with lymphatic diseases in the past?
boolean
C0024228 (UMLS CUI [1])
Lymphatic disease
Item
Please specify the problem with your lymphatic system you experienced. If there´s more than one, please describe it one by one
text
C0024228 (UMLS CUI [1])
Start date
Item
Start date of your problems with the lymphatic system
date
C0011008 (UMLS CUI [1])
End date
Item
End date of your problems with the lymphatic system
date
C0011008 (UMLS CUI [1])
Ongoing
Item
Is the symptom persistent?
boolean
C0549178 (UMLS CUI [1])
Allergies
Item
Have you experienced problems with allergies in the past?
boolean
C0020517 (UMLS CUI [1])
Allergies
Item
Please specify the allergy you experienced. If there´s more than one, please describe it one by one.
text
C0020517 (UMLS CUI [1])
Start date
Item
Start date of the allergy
date
C0011008 (UMLS CUI [1])
End date
Item
End date of the allergy
date
C0011008 (UMLS CUI [1])
Ongoing
Item
Is the allergy persistent?
boolean
C0549178 (UMLS CUI [1])
Immunologic diseases
Item
Have you experienced problems with your immune system in the past?
boolean
C0021053 (UMLS CUI [1])
Immunologic diseases
Item
Please specify the problem with your immune system you experienced. If there´s more than one, please desribe it one by one
text
C0021053 (UMLS CUI [1])
Start date
Item
Start date of your problems with the immune system
date
C0011008 (UMLS CUI [1])
End date
Item
End date of the problems with your immune system
date
C0011008 (UMLS CUI [1])
Ongoing
Item
Is the symptom persistent?
boolean
C0549178 (UMLS CUI [1])
Item
Cardiac condition
integer
C0262926 (UMLS CUI [1,1])
C0007222 (UMLS CUI [1,2])
C0007222 (UMLS CUI [1,2])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
If cardiac arrhythmia is present,please specify type
integer
C0003811 (UMLS CUI [1])
CL Item
Atrial fibrillation (1)
CL Item
Atrial flutter (2)
CL Item
Supraventricular tachycardia (3)
CL Item
Ventricular tachycardia (4)
CL Item
Bradycardia (5)
CL Item
Other, specify (6)
Arrhythmia
Item
If other Type of cardiac arrhythmia, please specify
text
C0003811 (UMLS CUI [1])
Arrhythmia
Item
Type of cardiac arrhythmia is unknown
boolean
C0003811 (UMLS CUI [1])
Item
Heart failure
integer
C0262926 (UMLS CUI [1,1])
C0007222 (UMLS CUI [1,2])
C0007222 (UMLS CUI [1,2])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Ischemia heart disease
integer
C0262926 (UMLS CUI [1,1])
C0007222 (UMLS CUI [1,2])
C0007222 (UMLS CUI [1,2])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Abnormal echocardiogram
integer
C0262926 (UMLS CUI [1,1])
C0007222 (UMLS CUI [1,2])
C0007222 (UMLS CUI [1,2])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
If abnormal echocardiogram: decreased LV function
integer
C0476369 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Abnormal echocardiogram
Item
If other abnormal echocardiogram, please specify
text
C0476369 (UMLS CUI [1])
Item
Cardiac surgery/mechanical intervention
integer
C0262926 (UMLS CUI [1,1])
C0007222 (UMLS CUI [1,2])
C0007222 (UMLS CUI [1,2])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
If Cardiac surgery/mechanical intervention,please specify
integer
C0018821 (UMLS CUI [1,1])
C0581396 (UMLS CUI [1,2])
C0581396 (UMLS CUI [1,2])
Code List
If Cardiac surgery/mechanical intervention,please specify
CL Item
Coronary artery bypass graft (CABG) (1)
CL Item
Cardiac valve surgery, including non-open surgery (i.e., percutaneous valvuloplasty) (2)
CL Item
Pacemaker (3)
CL Item
Implantable cardic defibrillator (4)
CL Item
Other, specify (5)
Cardiac surgery/mechanical intervention
Item
Date of most recent surgery
date
C0018821 (UMLS CUI [1,1])
C0581396 (UMLS CUI [1,2])
C0581396 (UMLS CUI [1,2])
Item
Congenital heart disease
integer
C0262926 (UMLS CUI [1,1])
C0007222 (UMLS CUI [1,2])
C0007222 (UMLS CUI [1,2])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Diabetes mellitus (type I or type II)?
integer
C0262926 (UMLS CUI [1,1])
C0014130 (UMLS CUI [1,2])
C0014130 (UMLS CUI [1,2])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
CL Item
Type I (1)
CL Item
Type II (2)
Diabetes mellitus age at diagnosis
Item
Diabetes mellitus age at diagnosis
integer
C0011849 (UMLS CUI [1,1])
C1828181 (UMLS CUI [1,2])
C1828181 (UMLS CUI [1,2])
Item
Diabetes mellitus complications
integer
C0011849 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0009566 (UMLS CUI [1,2])
CL Item
Nephropathy (1)
CL Item
Neuropathy (2)
CL Item
Retinopathy (3)
CL Item
Other, specify (4)
CL Item
None (5)
Diabetes mellitus complications
Item
Diabetes mellitus: other complications,please specify
text
C0011849 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
C0009566 (UMLS CUI [1,2])
Item
Indicate the treatments taken for diabetes
integer
C0011849 (UMLS CUI [1,1])
C0087111 (UMLS CUI [1,2])
C0087111 (UMLS CUI [1,2])
CL Item
Diet (1)
CL Item
Oral medication (2)
CL Item
Insulin (3)
CL Item
None (4)
Item
Clinical depression within the past year
integer
C0262926 (UMLS CUI [1,1])
C0004936 (UMLS CUI [1,2])
C0004936 (UMLS CUI [1,2])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Age at diagnosis/onset
Item
Age at which participant/subject experienced first depressive episode or was first diagnosed with depression, whichever is earlier (years):
integer
C1828181 (UMLS CUI [1,1])
C0150907 (UMLS CUI [1,2])
C0150907 (UMLS CUI [1,2])
Item
Clinical anxiety within the past year
integer
C0262926 (UMLS CUI [1,1])
C0004936 (UMLS CUI [1,2])
C0004936 (UMLS CUI [1,2])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Psychotic disorder diagnosis
integer
C0262926 (UMLS CUI [1,1])
C0004936 (UMLS CUI [1,2])
C0004936 (UMLS CUI [1,2])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Psychotic disorder diagnosis: If Yes, choose all disorders that apply
integer
C0033975 (UMLS CUI [1])
Code List
Psychotic disorder diagnosis: If Yes, choose all disorders that apply
CL Item
Schizophrenia (1)
CL Item
Bipolar disorder (2)
CL Item
Depression with psychotic features (3)
CL Item
Dementia with psychotic ideation (4)
CL Item
Other, specify (5)
Psychotic disorder diagnosis
Item
If other psychotic disorder diagnosis,please specify
text
C0033975 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Cancer diagnosis
Item
Cancer diagnosis:if yes, please specify type of cancer diagnosed with
text
C0920688 (UMLS CUI [1])
Item
Cancer diagnosis: treated with head or neck radiation?
integer
C0920688 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No/Not documented (2)
CL Item
Unknown (3)
Item
Does/did the participant/ subject have ADHD/ADD?
integer
C1263846 (UMLS CUI [1,1])
C0041671 (UMLS CUI [1,2])
C0041671 (UMLS CUI [1,2])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Does/did the participant/ subject have delayed acquisition of language/cognitive milestones, diagnosed by a pediatrician or neurologist?
integer
C0023012 (UMLS CUI [1,1])
C1959866 (UMLS CUI [1,2])
C1959866 (UMLS CUI [1,2])
Code List
Does/did the participant/ subject have delayed acquisition of language/cognitive milestones, diagnosed by a pediatrician or neurologist?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Does/did the participant/ subject have delayed acquisition of motor milestones, diagnosed by a pediatrician or neurologist?
integer
C1854301 (UMLS CUI [1])
Code List
Does/did the participant/ subject have delayed acquisition of motor milestones, diagnosed by a pediatrician or neurologist?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Does/did the participant/ subject have social delay?
integer
C3840125 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Does/did the participant/ subject have hand preference before 12 months of age?
integer
C0422881 (UMLS CUI [1,1])
C0517081 (UMLS CUI [1,2])
C0517081 (UMLS CUI [1,2])
Code List
Does/did the participant/ subject have hand preference before 12 months of age?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Does/did the participant/ subject have abnormality of the gait noted by parents or a physician at the time the child began walking?
integer
C0575081 (UMLS CUI [1,1])
C0599196 (UMLS CUI [1,2])
C0599196 (UMLS CUI [1,2])
Code List
Does/did the participant/ subject have abnormality of the gait noted by parents or a physician at the time the child began walking?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Does/did the participant/ subject have special education?
integer
C0013649 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
CL Item
Full-time regular education without aide (1)
CL Item
Full-time regular education with one to one aide (2)
CL Item
Regular education with pull-out for certain areas (3)
CL Item
Special education w/ minimal inclusion (e.g., lunch) (4)
CL Item
Full-time special education with no inclusion (5)
CL Item
Special (MR/DD) school (6)
CL Item
Home-school (7)
CL Item
Not in school (8)
CL Item
Other, specify (9)
School placement
Item
If other school placement, please specify
text
C0455002 (UMLS CUI [1])
Item
Does/did the participant/subject receive any specialized therapies and services?
integer
C0013649 (UMLS CUI [1])
Code List
Does/did the participant/subject receive any specialized therapies and services?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Specialized therapies and services
Item
Did the patient receive speech therapy?
boolean
C0037831 (UMLS CUI [1])
Specialized therapies and services
Item
Did the patient receive Occupational Therapy?
boolean
C1318464 (UMLS CUI [1])
Specialized therapies and services
Item
Did the patient receive Physical Therapy?
boolean
C0949766 (UMLS CUI [1])
Specialized therapies and services
Item
Did the patient receive Sensory Integration
boolean
C0695560 (UMLS CUI [1])
Specialized therapies and services
Item
Did the patient receive Social Skills Training
boolean
C0150777 (UMLS CUI [1])
Specialized therapies and services
Item
Did the patient receive Adaptive Physical Education
boolean
C0031805 (UMLS CUI [1,1])
C0814282 (UMLS CUI [1,2])
C0814282 (UMLS CUI [1,2])
Specialized therapies and services
Item
Did the patient receive Behavior Support Plan
boolean
C0150143 (UMLS CUI [1])
Specialized therapies and services
Item
Did the patient receive Crisis Management Plan
boolean
C1443432 (UMLS CUI [1])
Specialized therapies and services
Item
If patient received other specialized therapies and services, please specify
text
C0013649 (UMLS CUI [1])
Item
Does participant/ subject have a history of prior pregnancy? (both term and not to term)
integer
C0032967 (UMLS CUI [1])
Code List
Does participant/ subject have a history of prior pregnancy? (both term and not to term)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Number of pregnancies
Item
Number of pregnancies
integer
C0422807 (UMLS CUI [1])
Date of last delivery or miscarriage
Item
Year of last delivery or miscarriage
integer
C3262384 (UMLS CUI [1,1])
C0000786 (UMLS CUI [1,2])
C0000786 (UMLS CUI [1,2])
Number of miscarriages
Item
Number of miscarriages
integer
C0429916 (UMLS CUI [1])
Mother’s age at the time she gave birth
Item
Mother’s age at the time she gave birth to the participant/subject
integer
C2136466 (UMLS CUI [1])
Number of live born children
Item
Number of live born children the participant/subject’s mother has delivered
integer
C0425981 (UMLS CUI [1])
Number of pregnancies
Item
Total number of times the participant/subject’s mother has been pregnant, regardless of whether these pregnancies were carried to term
integer
C3812254 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Preeclampsia during pregnancy of the participant/subject?
integer
C0032914 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Another hypertensive disorder during pregnancy of the participant/subject?
integer
C0020538 (UMLS CUI [1,1])
C0032962 (UMLS CUI [1,2])
C0032962 (UMLS CUI [1,2])
Code List
Another hypertensive disorder during pregnancy of the participant/subject?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Gestational onset diabetes during pregnancy of the participant/subject?
integer
C0085207 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Fever during delivery of participant/subject?
integer
C1389671 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Prolonged rupture of membraines (i.e., > 24 hours) during delivery of participant/subject?
integer
C0405050 (UMLS CUI [1])
Code List
Prolonged rupture of membraines (i.e., > 24 hours) during delivery of participant/subject?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Second stage of labor more than two hours?
integer
C0157266 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Birth weight
Item
Birth weight
float
C0005612 (UMLS CUI [1])
Gestational Age at Birth
Item
Gestational Age at Birth
float
C0456129 (UMLS CUI [1])
CL Item
0 (0)
CL Item
1 (1)
CL Item
2 (2)
CL Item
3 (3)
CL Item
4 (4)
CL Item
5 (5)
CL Item
6 (6)
CL Item
7 (7)
CL Item
8 (8)
CL Item
9 (9)
CL Item
10 (10)
CL Item
0 (0)
CL Item
1 (1)
CL Item
2 (2)
CL Item
3 (3)
CL Item
4 (4)
CL Item
5 (5)
CL Item
6 (6)
CL Item
7 (7)
CL Item
8 (8)
CL Item
9 (9)
CL Item
10 (10)
CL Item
Spontaneous (1)
CL Item
Induced (2)
CL Item
Unknown (3)
CL Item
Vaginal (1)
CL Item
Caesarean (2)
CL Item
Emergency (1)
CL Item
Elective (2)
CL Item
Unknown (3)
CL Item
Breech (1)
CL Item
Cephalic (2)
CL Item
Unknown (3)
Item
Instrument(s) used to assist with the delivery of the participant/subject?
integer
C0877233 (UMLS CUI [1])
Code List
Instrument(s) used to assist with the delivery of the participant/subject?
CL Item
None (1)
CL Item
Vaccum (2)
CL Item
Forceps (3)
CL Item
Vaccum and Forceps (4)
CL Item
Unknown (5)
Item
Resuscitation of the participant/subject at delivery?
integer
C0374651 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Intravascular catheter placed in newborn period?
integer
C0179777 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Placenta sent for pathology?
integer
C0032043 (UMLS CUI [1,1])
C0444061 (UMLS CUI [1,2])
C0444061 (UMLS CUI [1,2])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Other pregnancy/delivery risk factors
integer
C0242786 (UMLS CUI [1,1])
C1171158 (UMLS CUI [1,2])
C1171158 (UMLS CUI [1,2])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)