ID

23790

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

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

July 13, 2017

DOI

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License

Creative Commons BY-NC 3.0
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Registration CRF ImproveCareNow

English

Registration CRF ImproveCareNow

1 forms  
Registration
Description

Registration

Date of Registration
Description

enldt

Data type

date

Demographics
Description

Demographics

Birth Date
Description

birthdt

Data type

date

Date of Diagnosis: Day
Description

diagday

Data type

integer

Date of Diagnosis: Month
Description

diagmon

Data type

text

Date of Diagnosis: Year
Description

diagyear

Data type

integer

Date of diagnosis unknown
Description

Date of diagnosis unknown

Data type

boolean

Date of diagnosis not available but:
Description

Time since daze of diagnosis

Data type

text

Patient's Diagnosis
Description

e_diagnosis

Data type

integer

Gender
Description

e_gender

Data type

integer

Ethnicity
Description

ethnicity

Data type

integer

Race
Description

Race

Race (Check all that apply)
Description

e_race

Data type

integer

Other Race
Description

e_racespec

Data type

text

Parents Education
Description

Parents Education

Mother
Description

mother_edu

Data type

integer

Father
Description

father_edu

Data type

integer

Patient Info: Health Insurance
Description

Patient Info: Health Insurance

Health Insurance
Description

phi

Data type

integer

Patient Info: Height/Weight
Description

Patient Info: Height/Weight

Recent Past Height from at least 6 months prior to this visit: Unit
Description

e_prevht unit

Data type

text

Recent Past Height from at least 6 months prior to this visit (to the nearest tenth)
Description

e_prevht

Data type

integer

Unknown
Description

e_prevht unknown

Data type

boolean

Date the height was measured: Day
Description

htday

Data type

integer

Date the height was measured: Month
Description

htmon

Data type

text

Date the height was measured: Year
Description

htyear

Data type

integer

Recent Past Weight from at least 4 months prior to this visit: Unit
Description

e_prevwt unit

Data type

text

Recent Past Weight from at least 4 months prior to this visit (to the nearest tenth)
Description

e_prevwt

Data type

integer

Unknown
Description

e_prevwt unknown

Data type

boolean

Date the weight was measured: Day
Description

wtday

Data type

integer

Date the weight was measured: Month
Description

wtmon

Data type

text

Date the weight was measured: Year
Description

wtyear

Data type

integer

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)

Macroscopic Lower GI Disease
Description

e_exchrn

Data type

integer

Macroscopic Upper GI Disease proximal to the ligament of Treitz
Description

e_exchrn_upper_prox

Data type

integer

Macroscopic Upper GI Disease distal to the ligament of Treitz
Description

e_exchrn_upper_dist

Data type

integer

What is the Crohn’s Disease Phenotype? (Select one)
Description

e_crphen

Data type

integer

Perianal Phenotype
Description

e_perianaldis

Data type

integer

Extent of Disease: Ulcerative Colitis subjects only
Description

Extent of Disease: Ulcerative Colitis subjects only

Extent of disease
Description

e_disuculcproc

Data type

integer

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

uc_behav

Data type

integer

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Similar models

Registration CRF ImproveCareNow

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Registration
enldt
Item
Date of Registration
date
Item Group
Demographics
birthdt
Item
Birth Date
date
diagday
Item
Date of Diagnosis: Day
integer
Item
Date of Diagnosis: Month
text
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)
diagyear
Item
Date of Diagnosis: Year
integer
Date of diagnosis unknown
Item
Date of diagnosis unknown
boolean
Item
Date of diagnosis not available but:
text
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
e_diagnosis
Code List
Patient's Diagnosis
CL Item
Crohn's Disease (1)
CL Item
Ulcerative Colitis (2)
CL Item
Indeterminate Colitis (3)
Item
Gender
integer
e_gender
Code List
Gender
CL Item
Male (1)
CL Item
Female (2)
Item
Ethnicity
integer
ethnicity
Code List
Ethnicity
CL Item
Hispanic (1)
CL Item
Non-Hispanic (3)
CL Item
Not Assessed/Collected (98)
Item Group
Race
Item
Race (Check all that apply)
integer
e_race
Code List
Race (Check all that apply)
CL Item
American Indian or Alaska Native (1)
CL Item
Asian (2)
CL Item
Black or African American  (4)
CL Item
Native Hawaiian or Other Pacific Islander (3)
CL Item
White  (5)
CL Item
Other (specify)  (7)
CL Item
Not Assessed/Collected (98)
e_racespec
Item
Other Race
text
Item Group
Parents Education
Item
Mother
integer
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
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
Item
Health Insurance
integer
phi
Code List
Health Insurance
CL Item
Medicaid (1)
CL Item
Commercial (2)
CL Item
Both Medicaid and Commercial (3)
CL Item
No Insurance (4)
CL Item
Don't Know (99)
Item Group
Patient Info: Height/Weight
Item
Recent Past Height from at least 6 months prior to this visit: Unit
text
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)
e_prevht
Item
Recent Past Height from at least 6 months prior to this visit (to the nearest tenth)
integer
e_prevht unknown
Item
Unknown
boolean
htday
Item
Date the height was measured: Day
integer
Item
Date the height was measured: Month
text
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)
htyear
Item
Date the height was measured: Year
integer
Item
Recent Past Weight from at least 4 months prior to this visit: Unit
text
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)
e_prevwt
Item
Recent Past Weight from at least 4 months prior to this visit (to the nearest tenth)
integer
e_prevwt unknown
Item
Unknown
boolean
wtday
Item
Date the weight was measured: Day
integer
Item
Date the weight was measured: Month
text
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)
wtyear
Item
Date the weight was measured: Year
integer
Item Group
Extent of Disease: Crohn’s Disease/Indeterminate colitis subjects only (select one for each category)
Item
Macroscopic Lower GI Disease
integer
e_exchrn
Code List
Macroscopic Lower GI Disease
CL Item
None (0)
CL Item
Ileal only (1)
CL Item
Colonic only (2)
CL Item
Ileocolonic (3)
CL Item
Not Assessed (8)
CL Item
Don’t Know (9)
Item
Macroscopic Upper GI Disease proximal to the ligament of Treitz
integer
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
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
e_crphen
Code List
What is the Crohn’s Disease Phenotype? (Select one)
CL Item
Inflammatory, non-penetrating, non-stricturing (1)
CL Item
Stricturing only (2)
CL Item
Penetrating only (3)
CL Item
Both stricturing and penetrating (5)
CL Item
Don't Know (4)
Item
Perianal Phenotype
integer
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
Item
Extent of disease
integer
e_disuculcproc
Code List
Extent of disease
CL Item
Ulcerative Procitis (rectum only) (1)
CL Item
Left sided Ulcerative Colitis (distal to the splenic flexure only) (2)
CL Item
Extensive Ulcerative Colitis (extends proximal to the splenic flexure) (3)
CL Item
Pancolitis (the entire colon) (4)
CL Item
Not Assessed completely (colonoscopy incomplete) (6)
CL Item
Don’t Know (7)
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
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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