ID

43772

Description

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/

Keywords

  1. 7/13/17 7/13/17 -
  2. 7/23/17 7/23/17 -
  3. 9/20/21 9/20/21 -
Uploaded on

September 20, 2021

DOI

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License

Creative Commons BY-NC 3.0

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Registration CRF ImproveCareNow

Registration CRF ImproveCareNow

Registration
Description

Registration

Alias
UMLS CUI-1
C1514821
Date of Registration
Description

Date of Registration

Data type

date

Alias
UMLS CUI [1]
C2985881
Demographics
Description

Demographics

Alias
UMLS CUI-1
C1704791
Birth Date
Description

Birth Date

Data type

date

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

Date of Diagnosis Day

Data type

partialDate

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

Date of Diagnosis Month

Data type

text

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

Date of Diagnosis Year

Data type

partialDate

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

Date of diagnosis unknown

Data type

boolean

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

Since when Date of diagnosis

Data type

text

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

Diagnosis

Data type

integer

Alias
UMLS CUI [1]
C0011900
Gender
Description

Gender

Data type

integer

Alias
UMLS CUI [1]
C0079399
Ethnicity
Description

ethnicity

Data type

integer

Alias
UMLS CUI [1]
C0015031
Race
Description

Race

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

Race

Data type

integer

Alias
UMLS CUI [1]
C0034510
Other Race
Description

Other Race

Data type

text

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

Parents Education

Alias
UMLS CUI-1
C0680057
Mother
Description

Parents Education Mother

Data type

integer

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

Parents Education

Data type

integer

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

Patient Info: Health Insurance

Alias
UMLS CUI-1
C0021682
Health Insurance
Description

Health Insurance

Data type

integer

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

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
Description

Height past unit

Data type

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)
Description

Height past

Data type

integer

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

Unknown

Data type

boolean

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

date height measurement Day

Data type

partialDate

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

date height measurement Month

Data type

text

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

date height measurement Year

Data type

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
Description

Weight past unit

Data type

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)
Description

Weight past

Data type

integer

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

Unknown

Data type

boolean

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

Date Body Weight Measurement Day

Data type

partialDate

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

Date Body Weight Measurement Month

Data type

text

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

Date Body Weight Measurement Year

Data type

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)
Description

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
Description

GIT disease lower macroscopic

Data type

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
Description

GIT disease macroscopic ligament of Treitz proximal

Data type

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
Description

GIT disease macroscopic ligament of Treitz distal

Data type

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)
Description

Crohn Disease Phenotype

Data type

integer

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

Perianal Phenotype

Data type

integer

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

Extent of Disease: Ulcerative Colitis subjects only

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

Extent of disease

Data type

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?
Description

Ulcerative Colitis Behavior

Data type

integer

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

Similar models

Registration CRF ImproveCareNow

Name
Type
Description | Question | Decode (Coded Value)
Data type
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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])
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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