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ERKNet Alport registry: Patient information

23 forms  
Basic data
Description

Basic data

Alias
UMLS CUI [1,1]
C2707520
Family Code
Description

I.alport_fam_code

Data type

text

Alias
UMLS CUI [1,1]
C3669174
Family member
Description

I.alport_fam_member

Data type

text

Alias
UMLS CUI [1,1]
C0086282
Pathologic anamnestic history
Description

Pathologic anamnestic history

Alias
UMLS CUI [1,1]
C0679831
UMLS CUI [1,2]
C0262926
UMLS CUI [1,3]
C1704258
Microhematuria
Description

I.alport_microhematuria

Data type

text

Alias
UMLS CUI [1,1]
C0239937
If yes: Age of onset (years)
Description

I.alport_microhematuria_onset

Data type

integer

Alias
UMLS CUI [1,1]
C0239937
UMLS CUI [1,2]
C0206132
Macrohematuria
Description

I.alport_macrohematuria

Data type

text

Alias
UMLS CUI [1,1]
C0473237
If yes: Age of onset (years)
Description

I.alport_macrohematuria_onset

Data type

integer

Alias
UMLS CUI [1,1]
C0473237
UMLS CUI [1,2]
C0206132
Proteinuria
Description

I.alport_proteinuria

Data type

text

Alias
UMLS CUI [1,1]
C0033687
If yes: Age of onset (years)
Description

I.alport_proteinuria_onset

Data type

integer

Alias
UMLS CUI [1,1]
C0206132
UMLS CUI [1,2]
C0033687
CKD
Description

I.alport_ckd

Data type

text

Alias
UMLS CUI [1,1]
C2074731
If CKD>1: Age of onset (years)
Description

I.alport_ckd_onset

Data type

integer

Alias
UMLS CUI [1,1]
C0206132
UMLS CUI [1,2]
C1561643
Hearing loss
Description

I.alport_hearloss

Data type

text

Alias
UMLS CUI [1,1]
C3887873
If yes: Age of onset (years)
Description

I.alport_hearloss_onset

Data type

integer

Alias
UMLS CUI [1,1]
C0206132
UMLS CUI [1,2]
C3887873
Ocular lesion
Description

I.alport_ocular

Data type

text

Alias
UMLS CUI [1,1]
C1299003
UMLS CUI [1,2]
C0221198
If yes: Age of onset (years)
Description

I.alport_ocular_onset

Data type

integer

Alias
UMLS CUI [1,1]
C0206132
UMLS CUI [1,2]
C1299003
UMLS CUI [1,3]
C0221198
Histopathological diagnosis
Description

Histopathological diagnosis

Alias
UMLS CUI [1,1]
C0677043
UMLS CUI [1,2]
C0011900
Electron Microscopy on kidney biopsy
Description

I.alport_his_em

Data type

text

Alias
UMLS CUI [1,1]
C0026019
UMLS CUI [1,2]
C0194073
If yes, result: thinning
Description

I.alport_his_em_thin

Data type

boolean

Alias
UMLS CUI [1,1]
C1274040
UMLS CUI [1,2]
C0026019
UMLS CUI [1,3]
C0194073
UMLS CUI [1,4]
C0005953
If yes, result: thickening
Description

I.alport_his_em_thick

Data type

boolean

Alias
UMLS CUI [1,1]
C1274040
UMLS CUI [1,2]
C0026019
UMLS CUI [1,3]
C0194073
UMLS CUI [1,4]
C0005953
If yes, result: basket-waves
Description

I.alport_his_em_baswave

Data type

boolean

Alias
UMLS CUI [1,1]
C1274040
UMLS CUI [1,2]
C0026019
UMLS CUI [1,3]
C0194073
UMLS CUI [1,4]
C0005953
If yes, result: splitting
Description

I.alport_his_em_split

Data type

boolean

Alias
UMLS CUI [1,1]
C1274040
UMLS CUI [1,2]
C0026019
UMLS CUI [1,3]
C0194073
UMLS CUI [1,4]
C0005953
If yes, result: others
Description

I.alport_his_em_other

Data type

boolean

Alias
UMLS CUI [1,1]
C1274040
UMLS CUI [1,2]
C0026019
UMLS CUI [1,3]
C0194073
UMLS CUI [1,4]
C0205394
specify others:
Description

I.alport_his_em_other_specify

Data type

text

Alias
UMLS CUI [1,1]
C3845569
UMLS CUI [1,2]
C1274040
UMLS CUI [1,3]
C0026019
UMLS CUI [1,4]
C0194073
Standard IF analysis on kidney
Description

I.alport_his_if

Data type

text

Alias
UMLS CUI [1,1]
C0079604
UMLS CUI [1,2]
C0022646
If yes, results:
Description

I.alport_his_if_results

Data type

text

Alias
UMLS CUI [1,1]
C1274040
UMLS CUI [1,2]
C0079604
UMLS CUI [1,3]
C0022646
if positive, specify:
Description

I.alport_his_if_results_specify

Data type

text

Alias
UMLS CUI [1,1]
C1521902
UMLS CUI [1,2]
C1446409
UMLS CUI [1,3]
C1274040
UMLS CUI [1,4]
C0079604
UMLS CUI [1,5]
C0022646
Skin biopsy
Description

Skin biopsy

Alias
UMLS CUI [1,1]
C0150866
Immunohistochemical analysis on skin biopsy: alpha 1
Description

I.skin_iha_alpha1_done

Data type

text

Alias
UMLS CUI [1,1]
C0021044
UMLS CUI [1,2]
C0150866
UMLS CUI [1,3]
C0201856
Immunohistochemical analysis on skin biopsy: alpha 1 - result
Description

I.skin_iha_alpha1_result

Data type

text

Alias
UMLS CUI [1,1]
C0021044
UMLS CUI [1,2]
C0150866
UMLS CUI [1,3]
C0201856
UMLS CUI [1,4]
C1274040
Immunohistochemical analysis on skin biopsy: alpha 5
Description

I.skin_iha_alpha5_done

Data type

text

Alias
UMLS CUI [1,1]
C0021044
UMLS CUI [1,2]
C0150866
UMLS CUI [1,3]
C1312514
Immunohistochemical analysis on skin biopsy: alpha 5 - result
Description

I.skin_iha_alpha5_result

Data type

text

Alias
UMLS CUI [1,1]
C0021044
UMLS CUI [1,2]
C0150866
UMLS CUI [1,3]
C1312514
UMLS CUI [1,4]
C1274040
Immunohistochemical analysis on skin biopsy: alpha 6
Description

I.skin_iha_alpha6_done

Data type

text

Alias
UMLS CUI [1,1]
C0021044
UMLS CUI [1,2]
C0150866
UMLS CUI [1,3]
C0289325
Immunohistochemical analysis on skin biopsy: alpha 6 - result
Description

I.skin_iha_alpha6_result

Data type

text

Alias
UMLS CUI [1,1]
C0021044
UMLS CUI [1,2]
C0150866
UMLS CUI [1,3]
C0289325
UMLS CUI [1,4]
C1274040
Confocal analysis on skin biopsy
Description

I.skin_cfa_alport

Data type

text

Alias
UMLS CUI [1,1]
C0242842
UMLS CUI [1,2]
C0150866
if yes: Results (ALPORT)
Description

I.skin_cfa_results_alport

Data type

text

Alias
UMLS CUI [1,1]
C0242842
UMLS CUI [1,2]
C0150866
UMLS CUI [1,3]
C1274040
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Similar models

ERKNet Alport registry: Patient information

23 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Basic data
C2707520 (UMLS CUI [1,1])
I.alport_fam_code
Item
Family Code
text
C3669174 (UMLS CUI [1,1])
Item
Family member
text
C0086282 (UMLS CUI [1,1])
CL.104
Code List
Family member
CL Item
Index (reference) patient (P)
C0522476 (UMLS CUI [1,1])
CL Item
Sibling (Brother/Sister) (SIB)
C0037047 (UMLS CUI [1,1])
C0337514 (UMLS CUI [1,2])
C0337527 (UMLS CUI [1,3])
CL Item
Child (Son/Daughter) (CHI)
C0008059 (UMLS CUI [1,1])
C0011011 (UMLS CUI [1,2])
C0037683 (UMLS CUI [1,3])
CL Item
Parent (Father/Mother) (PAR)
C0026591 (UMLS CUI [1,1])
C0015671 (UMLS CUI [1,2])
CL Item
Aunt/Uncle (paternal) (AUP)
C3714276 (UMLS CUI [1,1])
C3714274 (UMLS CUI [1,2])
CL Item
Aunt/Uncle (maternal) (AUM)
C3714277 (UMLS CUI [1,1])
C3714275 (UMLS CUI [1,2])
CL Item
Grandparent (paternal) (GPP)
C3828639 (UMLS CUI [1,1])
CL Item
Grandparent (maternal) (GPM)
C3829175 (UMLS CUI [1,1])
CL Item
Niece/Nephew (paternal) (NNP)
C1553703 (UMLS CUI [1,1])
C2347452 (UMLS CUI [1,2])
CL Item
Niece/Nephew (maternal) (NNM)
C1553703 (UMLS CUI [1,1])
C2347083 (UMLS CUI [1,2])
CL Item
Cousin (paternal) (COP)
C3272878 (UMLS CUI [1,1])
CL Item
Cousin (maternal) (COM)
C3272873 (UMLS CUI [1,1])
Item Group
Pathologic anamnestic history
C0679831 (UMLS CUI [1,1])
C0262926 (UMLS CUI [1,2])
C1704258 (UMLS CUI [1,3])
Item
Microhematuria
text
C0239937 (UMLS CUI [1,1])
CL.2
Code List
Microhematuria
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
I.alport_microhematuria_onset
Item
If yes: Age of onset (years)
integer
C0239937 (UMLS CUI [1,1])
C0206132 (UMLS CUI [1,2])
Item
Macrohematuria
text
C0473237 (UMLS CUI [1,1])
CL.2
Code List
Macrohematuria
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
I.alport_macrohematuria_onset
Item
If yes: Age of onset (years)
integer
C0473237 (UMLS CUI [1,1])
C0206132 (UMLS CUI [1,2])
Item
Proteinuria
text
C0033687 (UMLS CUI [1,1])
CL.2
Code List
Proteinuria
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
I.alport_proteinuria_onset
Item
If yes: Age of onset (years)
integer
C0206132 (UMLS CUI [1,1])
C0033687 (UMLS CUI [1,2])
Item
CKD
text
C2074731 (UMLS CUI [1,1])
CL.93
Code List
CKD
CL Item
CKD1 (1)
C2316401 (UMLS CUI [1,1])
CL Item
CKD2 (2)
C2316786 (UMLS CUI [1,1])
CL Item
CKD3 (3)
C2316787 (UMLS CUI [1,1])
CL Item
CKD4 (4)
C4287536 (UMLS CUI [1,1])
CL Item
CKD5 (5)
C2316810 (UMLS CUI [1,1])
CL Item
Unknown (6)
C0439673 (UMLS CUI [1,1])
I.alport_ckd_onset
Item
If CKD>1: Age of onset (years)
integer
C0206132 (UMLS CUI [1,1])
C1561643 (UMLS CUI [1,2])
Item
Hearing loss
text
C3887873 (UMLS CUI [1,1])
CL.2
Code List
Hearing loss
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
I.alport_hearloss_onset
Item
If yes: Age of onset (years)
integer
C0206132 (UMLS CUI [1,1])
C3887873 (UMLS CUI [1,2])
Item
Ocular lesion
text
C1299003 (UMLS CUI [1,1])
C0221198 (UMLS CUI [1,2])
CL.2
Code List
Ocular lesion
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
I.alport_ocular_onset
Item
If yes: Age of onset (years)
integer
C0206132 (UMLS CUI [1,1])
C1299003 (UMLS CUI [1,2])
C0221198 (UMLS CUI [1,3])
Item Group
Histopathological diagnosis
C0677043 (UMLS CUI [1,1])
C0011900 (UMLS CUI [1,2])
Item
Electron Microscopy on kidney biopsy
text
C0026019 (UMLS CUI [1,1])
C0194073 (UMLS CUI [1,2])
CL.2
Code List
Electron Microscopy on kidney biopsy
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
I.alport_his_em_thin
Item
If yes, result: thinning
boolean
C1274040 (UMLS CUI [1,1])
C0026019 (UMLS CUI [1,2])
C0194073 (UMLS CUI [1,3])
C0005953 (UMLS CUI [1,4])
I.alport_his_em_thick
Item
If yes, result: thickening
boolean
C1274040 (UMLS CUI [1,1])
C0026019 (UMLS CUI [1,2])
C0194073 (UMLS CUI [1,3])
C0005953 (UMLS CUI [1,4])
I.alport_his_em_baswave
Item
If yes, result: basket-waves
boolean
C1274040 (UMLS CUI [1,1])
C0026019 (UMLS CUI [1,2])
C0194073 (UMLS CUI [1,3])
C0005953 (UMLS CUI [1,4])
I.alport_his_em_split
Item
If yes, result: splitting
boolean
C1274040 (UMLS CUI [1,1])
C0026019 (UMLS CUI [1,2])
C0194073 (UMLS CUI [1,3])
C0005953 (UMLS CUI [1,4])
I.alport_his_em_other
Item
If yes, result: others
boolean
C1274040 (UMLS CUI [1,1])
C0026019 (UMLS CUI [1,2])
C0194073 (UMLS CUI [1,3])
C0205394 (UMLS CUI [1,4])
I.alport_his_em_other_specify
Item
specify others:
text
C3845569 (UMLS CUI [1,1])
C1274040 (UMLS CUI [1,2])
C0026019 (UMLS CUI [1,3])
C0194073 (UMLS CUI [1,4])
Item
Standard IF analysis on kidney
text
C0079604 (UMLS CUI [1,1])
C0022646 (UMLS CUI [1,2])
CL.2
Code List
Standard IF analysis on kidney
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
Item
If yes, results:
text
C1274040 (UMLS CUI [1,1])
C0079604 (UMLS CUI [1,2])
C0022646 (UMLS CUI [1,3])
CL.106
Code List
If yes, results:
CL Item
negative (0)
C0205160 (UMLS CUI [1,1])
CL Item
positive (1)
C1446409 (UMLS CUI [1,1])
I.alport_his_if_results_specify
Item
if positive, specify:
text
C1521902 (UMLS CUI [1,1])
C1446409 (UMLS CUI [1,2])
C1274040 (UMLS CUI [1,3])
C0079604 (UMLS CUI [1,4])
C0022646 (UMLS CUI [1,5])
Item Group
Skin biopsy
C0150866 (UMLS CUI [1,1])
Item
Immunohistochemical analysis on skin biopsy: alpha 1
text
C0021044 (UMLS CUI [1,1])
C0150866 (UMLS CUI [1,2])
C0201856 (UMLS CUI [1,3])
CL.2
Code List
Immunohistochemical analysis on skin biopsy: alpha 1
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
Item
Immunohistochemical analysis on skin biopsy: alpha 1 - result
text
C0021044 (UMLS CUI [1,1])
C0150866 (UMLS CUI [1,2])
C0201856 (UMLS CUI [1,3])
C1274040 (UMLS CUI [1,4])
CL.107
Code List
Immunohistochemical analysis on skin biopsy: alpha 1 - result
CL Item
normal (0)
C0205307 (UMLS CUI [1,1])
CL Item
segmental (1)
C0205122 (UMLS CUI [1,1])
CL Item
absent (2)
C0332197 (UMLS CUI [1,1])
Item
Immunohistochemical analysis on skin biopsy: alpha 5
text
C0021044 (UMLS CUI [1,1])
C0150866 (UMLS CUI [1,2])
C1312514 (UMLS CUI [1,3])
CL.2
Code List
Immunohistochemical analysis on skin biopsy: alpha 5
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
Item
Immunohistochemical analysis on skin biopsy: alpha 5 - result
text
C0021044 (UMLS CUI [1,1])
C0150866 (UMLS CUI [1,2])
C1312514 (UMLS CUI [1,3])
C1274040 (UMLS CUI [1,4])
CL.107
Code List
Immunohistochemical analysis on skin biopsy: alpha 5 - result
CL Item
normal (0)
C0205307 (UMLS CUI [1,1])
CL Item
segmental (1)
C0205122 (UMLS CUI [1,1])
CL Item
absent (2)
C0332197 (UMLS CUI [1,1])
Item
Immunohistochemical analysis on skin biopsy: alpha 6
text
C0021044 (UMLS CUI [1,1])
C0150866 (UMLS CUI [1,2])
C0289325 (UMLS CUI [1,3])
CL.2
Code List
Immunohistochemical analysis on skin biopsy: alpha 6
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
Item
Immunohistochemical analysis on skin biopsy: alpha 6 - result
text
C0021044 (UMLS CUI [1,1])
C0150866 (UMLS CUI [1,2])
C0289325 (UMLS CUI [1,3])
C1274040 (UMLS CUI [1,4])
CL.107
Code List
Immunohistochemical analysis on skin biopsy: alpha 6 - result
CL Item
normal (0)
C0205307 (UMLS CUI [1,1])
CL Item
segmental (1)
C0205122 (UMLS CUI [1,1])
CL Item
absent (2)
C0332197 (UMLS CUI [1,1])
Item
Confocal analysis on skin biopsy
text
C0242842 (UMLS CUI [1,1])
C0150866 (UMLS CUI [1,2])
CL.2
Code List
Confocal analysis on skin biopsy
CL Item
No (0)
C1298908 (UMLS CUI [1,1])
CL Item
Yes (1)
C5399964 (UMLS CUI [1,1])
Item
if yes: Results (ALPORT)
text
C0242842 (UMLS CUI [1,1])
C0150866 (UMLS CUI [1,2])
C1274040 (UMLS CUI [1,3])
CL.108
Code List
if yes: Results (ALPORT)
CL Item
normal (0)
C0205307 (UMLS CUI [1,1])
CL Item
segmental (1)
C0205122 (UMLS CUI [1,1])
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