ID

43772

Beschrijving

Type of information collected in the ICN2 Database for the scientific infrastructure "ImproveCareNow" (http://www.improvecarenow.org/) to improve health outcome of chrildren and adolescents with IBD.

Link

http://www.improvecarenow.org/

Trefwoorden

Versies (3)
  1. 13-07-17 13-07-17 -
  2. 23-07-17 23-07-17 -
  3. 20-09-21 20-09-21 -
Geüploaded op

20 september 2021

DOI

Voor een aanvraag inloggen.

Licentie

Creative Commons BY-NC 3.0
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Registration CRF ImproveCareNow

Engels

Registration CRF ImproveCareNow

1 Formulieren  
Registration
Beschrijving

Registration

Alias
UMLS CUI-1
C1514821
Date of Registration
Beschrijving

Date of Registration

Datatype

date

Alias
UMLS CUI [1]
C2985881
Demographics
Beschrijving

Demographics

Alias
UMLS CUI-1
C1704791
Birth Date
Beschrijving

Birth Date

Datatype

date

Alias
UMLS CUI [1]
C0421451
Date of Diagnosis: Day
Beschrijving

Date of Diagnosis Day

Datatype

partialDate

Alias
UMLS CUI [1,1]
C2316983
UMLS CUI [1,2]
C0439228
Date of Diagnosis: Month
Beschrijving

Date of Diagnosis Month

Datatype

text

Alias
UMLS CUI [1,1]
C2316983
UMLS CUI [1,2]
C0439231
Date of Diagnosis: Year
Beschrijving

Date of Diagnosis Year

Datatype

partialDate

Alias
UMLS CUI [1,1]
C2316983
UMLS CUI [1,2]
C0439234
Date of diagnosis unknown
Beschrijving

Date of diagnosis unknown

Datatype

boolean

Alias
UMLS CUI [1,1]
C2316983
UMLS CUI [1,2]
C0439673
Date of diagnosis not available but:
Beschrijving

Since when Date of diagnosis

Datatype

text

Alias
UMLS CUI [1,1]
C0946385
UMLS CUI [1,2]
C2316983
Patient's Diagnosis
Beschrijving

Diagnosis

Datatype

integer

Alias
UMLS CUI [1]
C0011900
Gender
Beschrijving

Gender

Datatype

integer

Alias
UMLS CUI [1]
C0079399
Ethnicity
Beschrijving

ethnicity

Datatype

integer

Alias
UMLS CUI [1]
C0015031
Race
Beschrijving

Race

Alias
UMLS CUI-1
C0034510
Race (Check all that apply)
Beschrijving

Race

Datatype

integer

Alias
UMLS CUI [1]
C0034510
Other Race
Beschrijving

Other Race

Datatype

text

Alias
UMLS CUI [1,1]
C0205394
UMLS CUI [1,2]
C0034510
Parents Education
Beschrijving

Parents Education

Alias
UMLS CUI-1
C0680057
Mother
Beschrijving

Parents Education Mother

Datatype

integer

Alias
UMLS CUI [1,1]
C0680057
UMLS CUI [1,2]
C0026591
Father
Beschrijving

Parents Education

Datatype

integer

Alias
UMLS CUI [1,1]
C0680057
UMLS CUI [1,2]
C0015671
Patient Info: Health Insurance
Beschrijving

Patient Info: Health Insurance

Alias
UMLS CUI-1
C0021682
Health Insurance
Beschrijving

Health Insurance

Datatype

integer

Alias
UMLS CUI [1]
C0021682
Patient Info: Height/Weight
Beschrijving

Patient Info: Height/Weight

Alias
UMLS CUI-1
C0005890
UMLS CUI-3
C0005910
Recent Past Height from at least 6 months prior to this visit: Unit
Beschrijving

Height past unit

Datatype

text

Alias
UMLS CUI [1,1]
C0005890
UMLS CUI [1,2]
C1444637
UMLS CUI [1,3]
C0439148
Recent Past Height from at least 6 months prior to this visit (to the nearest tenth)
Beschrijving

Height past

Datatype

integer

Alias
UMLS CUI [1,1]
C0005890
UMLS CUI [1,2]
C1444637
Unknown
Beschrijving

Unknown

Datatype

boolean

Alias
UMLS CUI [1]
C0439673
Date the height was measured: Day
Beschrijving

date height measurement Day

Datatype

partialDate

Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C1623590
UMLS CUI [1,3]
C0439228
Date the height was measured: Month
Beschrijving

date height measurement Month

Datatype

text

Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C1623590
UMLS CUI [1,3]
C0439231
Date the height was measured: Year
Beschrijving

date height measurement Year

Datatype

partialDate

Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C1623590
UMLS CUI [1,3]
C0439234
Recent Past Weight from at least 4 months prior to this visit: Unit
Beschrijving

Weight past unit

Datatype

text

Alias
UMLS CUI [1,1]
C0005910
UMLS CUI [1,2]
C1444637
UMLS CUI [1,3]
C0439148
Recent Past Weight from at least 4 months prior to this visit (to the nearest tenth)
Beschrijving

Weight past

Datatype

integer

Alias
UMLS CUI [1,1]
C0005910
UMLS CUI [1,2]
C1444637
Unknown
Beschrijving

Unknown

Datatype

boolean

Alias
UMLS CUI [1]
C0439673
Date the weight was measured: Day
Beschrijving

Date Body Weight Measurement Day

Datatype

partialDate

Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C2985231
UMLS CUI [1,3]
C0439228
Date the weight was measured: Month
Beschrijving

Date Body Weight Measurement Month

Datatype

text

Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C2985231
UMLS CUI [1,3]
C0439231
Date the weight was measured: Year
Beschrijving

Date Body Weight Measurement Year

Datatype

partialDate

Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C2985231
UMLS CUI [1,3]
C0439234
Extent of Disease: Crohn’s Disease/Indeterminate colitis subjects only (select one for each category)
Beschrijving

Extent of Disease: Crohn’s Disease/Indeterminate colitis subjects only (select one for each category)

Alias
UMLS CUI-1
C0449279
UMLS CUI-2
C0010346
UMLS CUI-3
C0341332
Macroscopic Lower GI Disease
Beschrijving

GIT disease lower macroscopic

Datatype

integer

Alias
UMLS CUI [1,1]
C0012242
UMLS CUI [1,2]
C1548802
UMLS CUI [1,3]
C1551402
Macroscopic Upper GI Disease proximal to the ligament of Treitz
Beschrijving

GIT disease macroscopic ligament of Treitz proximal

Datatype

integer

Alias
UMLS CUI [1,1]
C0012242
UMLS CUI [1,2]
C1551402
UMLS CUI [1,3]
C1261087
UMLS CUI [1,4]
C0205107
Macroscopic Upper GI Disease distal to the ligament of Treitz
Beschrijving

GIT disease macroscopic ligament of Treitz distal

Datatype

integer

Alias
UMLS CUI [1,1]
C0012242
UMLS CUI [1,2]
C1551402
UMLS CUI [1,3]
C1261087
UMLS CUI [1,4]
C0205108
What is the Crohn’s Disease Phenotype? (Select one)
Beschrijving

Crohn Disease Phenotype

Datatype

integer

Alias
UMLS CUI [1,1]
C0010346
UMLS CUI [1,2]
C0031437
Perianal Phenotype
Beschrijving

Perianal Phenotype

Datatype

integer

Alias
UMLS CUI [1,1]
C0747465
UMLS CUI [1,2]
C0031437
Extent of Disease: Ulcerative Colitis subjects only
Beschrijving

Extent of Disease: Ulcerative Colitis subjects only

Alias
UMLS CUI-1
C0449279
UMLS CUI-2
C0009324
Extent of disease
Beschrijving

Extent of disease

Datatype

integer

Alias
UMLS CUI [1]
C0449279
Ulcerative Colitis Behavior: Has the patient ever had severe disease (defined as PUCAI ≥ 65 or severe disease determined by PGA) as an inpatient or outpatient?
Beschrijving

Ulcerative Colitis Behavior

Datatype

integer

Alias
UMLS CUI [1,1]
C0009324
UMLS CUI [1,2]
C0004927
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Similar models

Registration CRF ImproveCareNow

1 Formulieren
Name
Type
Description | Question | Decode (Coded Value)
Datatype
Alias
Item Group
Registration
C1514821 (UMLS CUI-1)
Date of Registration
Item
Date of Registration
date
C2985881 (UMLS CUI [1])
Item Group
Demographics
C1704791 (UMLS CUI-1)
Birth Date
Item
Birth Date
date
C0421451 (UMLS CUI [1])
Date of Diagnosis Day
Item
Date of Diagnosis: Day
partialDate
C2316983 (UMLS CUI [1,1])
C0439228 (UMLS CUI [1,2])
Item
Date of Diagnosis: Month
text
C2316983 (UMLS CUI [1,1])
C0439231 (UMLS CUI [1,2])
diagmon
Code List
Date of Diagnosis: Month
CL Item
Jan (Jan)
CL Item
Feb (Feb)
CL Item
Mar (Mar)
CL Item
Apr (Apr)
CL Item
May (May)
CL Item
Jun (Jun)
CL Item
Jul (Jul)
CL Item
Aug (Aug)
CL Item
Sep (Sep)
CL Item
Oct (Oct)
CL Item
Nov (Nov)
CL Item
Dec (Dec)
CL Item
Unk (Unk)
Date of Diagnosis Year
Item
Date of Diagnosis: Year
partialDate
C2316983 (UMLS CUI [1,1])
C0439234 (UMLS CUI [1,2])
Date of diagnosis unknown
Item
Date of diagnosis unknown
boolean
C2316983 (UMLS CUI [1,1])
C0439673 (UMLS CUI [1,2])
Item
Date of diagnosis not available but:
text
C0946385 (UMLS CUI [1,1])
C2316983 (UMLS CUI [1,2])
Time since diagdt
Code List
Date of diagnosis not available but:
CL Item
Less than 4 months (Less than 4 months)
CL Item
More than 4 months (More than 4 months)
Item
Patient's Diagnosis
integer
C0011900 (UMLS CUI [1])
e_diagnosis
Code List
Patient's Diagnosis
CL Item
Crohn's Disease (1)
C0010346 (UMLS CUI-1)
(Comment:en)
CL Item
Ulcerative Colitis (2)
C0009324 (UMLS CUI-1)
(Comment:en)
CL Item
Indeterminate Colitis (3)
C0341332 (UMLS CUI-1)
(Comment:en)
Item
Gender
integer
C0079399 (UMLS CUI [1])
e_gender
Code List
Gender
CL Item
Male (1)
C0086582 (UMLS CUI-1)
(Comment:en)
CL Item
Female (2)
C0086287 (UMLS CUI-1)
(Comment:en)
Item
Ethnicity
integer
C0015031 (UMLS CUI [1])
ethnicity
Code List
Ethnicity
CL Item
Hispanic (1)
C0086409 (UMLS CUI-1)
(Comment:en)
CL Item
Non-Hispanic (3)
C1518424 (UMLS CUI-1)
(Comment:en)
CL Item
Not Assessed/Collected (98)
(Comment:en)
Item Group
Race
C0034510 (UMLS CUI-1)
Item
Race (Check all that apply)
integer
C0034510 (UMLS CUI [1])
e_race
Code List
Race (Check all that apply)
CL Item
American Indian or Alaska Native (1)
C0683984 (UMLS CUI-1)
(Comment:en)
CL Item
Asian (2)
C0078988 (UMLS CUI-1)
(Comment:en)
CL Item
Black or African American  (4)
C0085756 (UMLS CUI-1)
(Comment:en)
CL Item
Native Hawaiian or Other Pacific Islander (3)
C0337920 (UMLS CUI-1)
(Comment:en)
CL Item
White  (5)
C0007457 (UMLS CUI-1)
(Comment:en)
CL Item
Other (specify)  (7)
C0205394 (UMLS CUI-1)
(Comment:en)
CL Item
Not Assessed/Collected (98)
(Comment:en)
Other Race
Item
Other Race
text
C0205394 (UMLS CUI [1,1])
C0034510 (UMLS CUI [1,2])
Item Group
Parents Education
C0680057 (UMLS CUI-1)
Item
Mother
integer
C0680057 (UMLS CUI [1,1])
C0026591 (UMLS CUI [1,2])
mother_edu
Code List
Mother
CL Item
Did not graduate high school (1)
CL Item
Graduated high school/GED (2)
CL Item
Some College (3)
CL Item
Graduated College (4)
CL Item
Attended Graduate School (5)
CL Item
Unknown (99)
Item
Father
integer
C0680057 (UMLS CUI [1,1])
C0015671 (UMLS CUI [1,2])
father_edu
Code List
Father
CL Item
Did not graduate high school (1)
CL Item
Graduated high school/GED (2)
CL Item
Some College (3)
CL Item
Graduated College (4)
CL Item
Attended Graduate School (5)
CL Item
Unknown (99)
Item Group
Patient Info: Health Insurance
C0021682 (UMLS CUI-1)
Item
Health Insurance
integer
C0021682 (UMLS CUI [1])
phi
Code List
Health Insurance
CL Item
Medicaid (1)
C0025071 (UMLS CUI-1)
(Comment:en)
CL Item
Commercial (2)
C3530230 (UMLS CUI-1)
(Comment:en)
CL Item
Both Medicaid and Commercial (3)
(Comment:en)
CL Item
No Insurance (4)
C3845078 (UMLS CUI-1)
(Comment:en)
CL Item
Don't Know (99)
C3843613 (UMLS CUI-1)
(Comment:en)
Item Group
Patient Info: Height/Weight
C0005890 (UMLS CUI-1)
C0005910 (UMLS CUI-3)
Item
Recent Past Height from at least 6 months prior to this visit: Unit
text
C0005890 (UMLS CUI [1,1])
C1444637 (UMLS CUI [1,2])
C0439148 (UMLS CUI [1,3])
e_prevht unit
Code List
Recent Past Height from at least 6 months prior to this visit: Unit
CL Item
cm (cm)
CL Item
in (in)
Height past
Item
Recent Past Height from at least 6 months prior to this visit (to the nearest tenth)
integer
C0005890 (UMLS CUI [1,1])
C1444637 (UMLS CUI [1,2])
Unknown
Item
Unknown
boolean
C0439673 (UMLS CUI [1])
date height measurement Day
Item
Date the height was measured: Day
partialDate
C0011008 (UMLS CUI [1,1])
C1623590 (UMLS CUI [1,2])
C0439228 (UMLS CUI [1,3])
Item
Date the height was measured: Month
text
C0011008 (UMLS CUI [1,1])
C1623590 (UMLS CUI [1,2])
C0439231 (UMLS CUI [1,3])
undefined item
Code List
Date the height was measured: Month
CL Item
Jan (Jan)
CL Item
Feb (Feb)
CL Item
Mar (Mar)
CL Item
Apr (Apr)
CL Item
May (May)
CL Item
Jun (Jun)
CL Item
Jul (Jul)
CL Item
Aug (Aug)
CL Item
Sep (Sep)
CL Item
Oct (Oct)
CL Item
Nov (Nov)
CL Item
Dec (Dec)
CL Item
Unk (Unk)
date height measurement Year
Item
Date the height was measured: Year
partialDate
C0011008 (UMLS CUI [1,1])
C1623590 (UMLS CUI [1,2])
C0439234 (UMLS CUI [1,3])
Item
Recent Past Weight from at least 4 months prior to this visit: Unit
text
C0005910 (UMLS CUI [1,1])
C1444637 (UMLS CUI [1,2])
C0439148 (UMLS CUI [1,3])
e_prevwt unit
Code List
Recent Past Weight from at least 4 months prior to this visit: Unit
CL Item
kg (kg)
CL Item
lb (lb)
Weight past
Item
Recent Past Weight from at least 4 months prior to this visit (to the nearest tenth)
integer
C0005910 (UMLS CUI [1,1])
C1444637 (UMLS CUI [1,2])
Unknown
Item
Unknown
boolean
C0439673 (UMLS CUI [1])
Date Body Weight Measurement Day
Item
Date the weight was measured: Day
partialDate
C0011008 (UMLS CUI [1,1])
C2985231 (UMLS CUI [1,2])
C0439228 (UMLS CUI [1,3])
Item
Date the weight was measured: Month
text
C0011008 (UMLS CUI [1,1])
C2985231 (UMLS CUI [1,2])
C0439231 (UMLS CUI [1,3])
wtmon
Code List
Date the weight was measured: Month
CL Item
Jan (Jan)
CL Item
Feb (Feb)
CL Item
Mar (Mar)
CL Item
Apr (Apr)
CL Item
May (May)
CL Item
Jun (Jun)
CL Item
Jul (Jul)
CL Item
Aug (Aug)
CL Item
Sep (Sep)
CL Item
Oct (Oct)
CL Item
Nov (Nov)
CL Item
Dec (Dec)
CL Item
Unk (Unk)
Date Body Weight Measurement Year
Item
Date the weight was measured: Year
partialDate
C0011008 (UMLS CUI [1,1])
C2985231 (UMLS CUI [1,2])
C0439234 (UMLS CUI [1,3])
Item Group
Extent of Disease: Crohn’s Disease/Indeterminate colitis subjects only (select one for each category)
C0449279 (UMLS CUI-1)
C0010346 (UMLS CUI-2)
C0341332 (UMLS CUI-3)
Item
Macroscopic Lower GI Disease
integer
C0012242 (UMLS CUI [1,1])
C1548802 (UMLS CUI [1,2])
C1551402 (UMLS CUI [1,3])
e_exchrn
Code List
Macroscopic Lower GI Disease
CL Item
None (0)
C0549184 (UMLS CUI-1)
(Comment:en)
CL Item
Ileal only (1)
C0020885 (UMLS CUI-1)
(Comment:en)
CL Item
Colonic only (2)
C0009368 (UMLS CUI-1)
(Comment:en)
CL Item
Ileocolonic (3)
C0677648 (UMLS CUI-1)
(Comment:en)
CL Item
Not Assessed (8)
(Comment:en)
CL Item
Don’t Know (9)
(Comment:en)
Item
Macroscopic Upper GI Disease proximal to the ligament of Treitz
integer
C0012242 (UMLS CUI [1,1])
C1551402 (UMLS CUI [1,2])
C1261087 (UMLS CUI [1,3])
C0205107 (UMLS CUI [1,4])
e_exchrn_upper_prox
Code List
Macroscopic Upper GI Disease proximal to the ligament of Treitz
CL Item
Yes (1)
CL Item
Not Assessed (2)
CL Item
No (0)
CL Item
Don’t Know (99)
Item
Macroscopic Upper GI Disease distal to the ligament of Treitz
integer
C0012242 (UMLS CUI [1,1])
C1551402 (UMLS CUI [1,2])
C1261087 (UMLS CUI [1,3])
C0205108 (UMLS CUI [1,4])
e_exchrn_upper_dist
Code List
Macroscopic Upper GI Disease distal to the ligament of Treitz
CL Item
Yes (1)
CL Item
No (0)
CL Item
Not Assessed (2)
CL Item
Don't Know (99)
Item
What is the Crohn’s Disease Phenotype? (Select one)
integer
C0010346 (UMLS CUI [1,1])
C0031437 (UMLS CUI [1,2])
e_crphen
Code List
What is the Crohn’s Disease Phenotype? (Select one)
CL Item
Inflammatory, non-penetrating, non-stricturing (1)
C0333348 (UMLS CUI-1)
(Comment:en)
CL Item
Stricturing only (2)
C1261287 (UMLS CUI-1)
(Comment:en)
CL Item
Penetrating only (3)
C0205321 (UMLS CUI-1)
(Comment:en)
CL Item
Both stricturing and penetrating (5)
(Comment:en)
CL Item
Don't Know (4)
(Comment:en)
Item
Perianal Phenotype
integer
C0747465 (UMLS CUI [1,1])
C0031437 (UMLS CUI [1,2])
e_perianaldis
Code List
Perianal Phenotype
CL Item
Yes (1)
CL Item
No (0)
CL Item
Don’t Know (2)
Item Group
Extent of Disease: Ulcerative Colitis subjects only
C0449279 (UMLS CUI-1)
C0009324 (UMLS CUI-2)
Item
Extent of disease
integer
C0449279 (UMLS CUI [1])
e_disuculcproc
Code List
Extent of disease
CL Item
Ulcerative Procitis (rectum only) (1)
(Comment:en)
CL Item
Left sided Ulcerative Colitis (distal to the splenic flexure only) (2)
(Comment:en)
CL Item
Extensive Ulcerative Colitis (extends proximal to the splenic flexure) (3)
(Comment:en)
CL Item
Pancolitis (the entire colon) (4)
C2063754 (UMLS CUI-1)
(Comment:en)
CL Item
Not Assessed completely (colonoscopy incomplete) (6)
(Comment:en)
CL Item
Don’t Know (7)
(Comment:en)
Item
Ulcerative Colitis Behavior: Has the patient ever had severe disease (defined as PUCAI ≥ 65 or severe disease determined by PGA) as an inpatient or outpatient?
integer
C0009324 (UMLS CUI [1,1])
C0004927 (UMLS CUI [1,2])
uc_behav
Code List
Ulcerative Colitis Behavior: Has the patient ever had severe disease (defined as PUCAI ≥ 65 or severe disease determined by PGA) as an inpatient or outpatient?
CL Item
Yes (1)
CL Item
no (0)
CL Item
Don’t Know (2)
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